Bubble of Denial

Well, Ma. It’s been almost three weeks since you left. It seemed very, very real those first fourteen hours.

We kept you overnight. You died so quickly (to us). When hospice left that morning, Eliza said you’d be with us maybe two or three days…a week max. So when you passed that same night after a mighty struggle, it did not feel right to let you go. You were sweaty and disheveled after the impossible business of dying.

Dad and I spent time getting you ready to leave your dream house as you normally would have…hair washed and done up, nails done, make-up on, bathed and in one of your most favorite, comfortable combos: a sweater, turtleneck and jeans.

It was real then.

But then we went to the funeral home. Decisions had to be made. A To Do list was forming…a long one. Texts with family were non-stop.

And then we went on to the cemetery for more questions. More decisions. More things to add to the To Do list. More texts.

Dad and I were quickly into the “We Gotta” Mode. We gotta do this. We gotta do that. We tapped friends and family. We moved. And moved. And didn’t stop.

Somehow, in the span of a day, you leaving us didn’t feel real at all.

The quiet in the house and the car and pretty much everywhere you’d have gone with me, was still deafening. Your oxygenators turned off and no one, not me, not Dad, not Karen or Autumn or Isabel, telling you what was going to happen or what would happen next was still weird. No one saying, “Uncross your legs,” or “We’re going to get up on the count of three. Ready? One, two, and three,” was still overwhelming.

There was no you, with a very slow, but hilarious one-liner. There was no you with a smile at Dad that lit up the room, his heart, and melted the rest of us. No you with a piercing look or a sarcastic one, or your most often…a loving one. But it felt like you were still everywhere in the house. We could feel you wherever we went.

The morning after, the shower door swung open on its own. Lights started burning out. The disposal tanked…twice and had to be replaced. The outlet in the bathroom blew not just its own fuse, but a second, so that all the lights on one side of the house were out. And the connectors to downstairs bathroom disintegrated when D.J. tried to fix them. It’s like you were reminding us to keep it light-hearted. Not to be sad.

We tried.

But it’s not like there weren’t tears. Sloppy, ugly tears. And hugs. And sobs. But they didn’t last long. Because we had, and still have, a long to do list. That to do list was all about you. Write the obituary. Meet with Pastor Charlie. And Pastor Kevin. Pull photos and print photos and sort photos.

Dad and I were pretty much glued at the hip…we still are. Dinners were late. I finally had to set a daily alarm at 4:16 to remind me to stop and get dinner ready. If not for Stacey and Beth, Tara and Liz, we might not have eaten at all that first week.

Shel brought down the last of her monarchs and three chrysalis for us to care for and release when the weather was better. Having the responsibility of keeping your beloved butters alive, injected life and purpose to our days and evenings.

At your funeral, we gathered. We stood together. Worshipped together. Sang your favorite songs together. You were in the room. Literally and spiritually. The love, the love you and Dad created, was everywhere.

There were tears. There was laughter. There was joy. There was pain. But we were together.

When D.J. placed your urn in the ground, there was a funny moment, that he’ll have to tell about. You face west towards the sunsets. And we let butterfly balloons go at the cemetery.

And then just when reality should have set in, when the total emptiness and all stopping of activity after the funeral happens, when we should have crashed, two things happened.

Shannon, our beloved funeral director (seriously, you’d love her) gave us the small bit of your ashes we’d requested. And second, our To Do list exploded.

It still feels like you’re just on vacation. You’re still everywhere around us. Literally. I know you wouldn’t have judged, but you probably would have raised an eyebrow, that I put the sandwich baggie of your ashes into a small Tupperware carrier and you went everywhere with us. LOL. I know it’s crazy.

We went to our beach one last time. It felt right to close that chapter definitively knowing that it was truly our last trip there together.

Friday, we gave you away per what you always wanted. And then Friday night we put the call out to see if anyone could take us out on Lake Elizabeth to bring you back to your Nepenthe forever–your one true wish, in death, to happen on this side of the grass.

Charlie jumped in right away to volunteer. On Saturday, we headed for Twinny. One week after your service, on a beautiful, warm fall day…the ones you absolutely adored, the ones where we would be at the lake to rake leaves or finish closing the house, we gathered to let you go.

Charlie was amazing. And irreverent. *smiling* He didn’t care if the new owner was standing on the shore. He pulled up in front of the cottage, so very close to the dock. I told Dad to scatter all of you, but he…per his norm…wanted to share you one last time. So we both scattered you.

It was terribly difficult to let you go, but peaceful and calm, too. We watched you settle on the top and the lazily and gorgeously drift to the bottom. You were incredibly graceful.

Charlie took us around the lake for old times sake. You would have loved it….I think you did.

And so now. Here we are. Without you. But feeling like you’re really not gone at all.

They really aren’t wrong…the experts…about the denial or…I don’t know, it’s not even denial.

I held your hand as you died. I sobbed when you died. We bathed you and dressed you after you passed. I know unequivocally that you are not here, that you are not coming back. And yet, it does not feel like that at all.

It feels like you, your spirit, your love spin and swirl around us, filling up our hearts so that we cannot be sad for very long.

It is the strangest feeling to be buoyed by your spirit, that feeling. And yet still know you’re not coming back.

But if I have to choose, I choose to stay in this strange juxtaposition of feeling against cognition forever.

What’s Next, You Ask?…Fuck You.

A very simple request, please do not ask someone who has been a caregiver….for any…ANY…length of time, “What’s next for you?” after their person has passed away.

I’ve been asked this multiple times (more than 15) starting just before my mom passed, including one of the Hospice Alliance nurses the night before my mom died.

I wanted to punch her…if I’m being totally honest.

But think about that… we’re in crisis mode (my dad and I) and this nurse sitting across from me at the kitchen table just casually asks, “so what are you going to do next?”

I mean Jesus Eff In Christ.

Seriously?

There’s a woman, MY MOM, actively transitioning from living to dying. And you’re asking this question like you’re asking about the weather?

But my mom died nine days ago. NINE DAYS.

We haven’t buried her yet.

I spent six years taking care of her. SIX.

AND SHE’S GONE.

FOREVER GONE.

I didn’t just leave a job.

I didn’t just break up with someone after two weeks.

She was my mom. She was my life. My heart. My soul. My best friend. My hope.

So fuck off asking that question. Just fuck right off.

Please let people take some time to breathe and grieve before you ask them what’s next?

The First Woman

As we’re getting ready for my lady, my Titan’s service…

My mom was the first woman ever to graduate from UWM with a Bachelor of Science in Business Administration from the Commerce Department and the only woman to graduate from the whole university system from the Commerce Department that year.

With high honors.

A newlywed and pregnant.

A Titan.

Rest well, Mom. Rest well…

PS: See her red nails? *winks*

The End.

Hey Mom,

The best way to remember you is to write you a long missive per your lifetime practice of writing long letters and emails to people in your tribe. It’s one of the things we’ll miss most about you being gone…long letters, emails, and cards with writing on all three sides. That, and long conversations that wind and loop around until we’re so lost in whatever we’re discussing that the rest of the world and all troubles fall away. You were so good at that… letting troubles fall away and being present in the moment. You were always present in the moment.

What’s that you ask? Where have you gone?

Um.

Well. Only you can answer that. But…

From this side of the Universe, here’s what happened:

After a beautifully bumpy, topsy, turvy, love and laughter-filled life, you pass away quietly on Tuesday night. Yes, that was September 22, 2020. You miss Tara’s and Priscilla’s birthdays. You plan that so that we would always be celebrating life instead of death, we think…

You always have tried to heal us when we were broken.

Yep. Yes. Exactly.

Your lungs are ultimately what…as you say… “took you out.” And yes, the Alzheimer’s had gotten worse. But we still see you in there. You still are able to rip off one-liners that bring us to tears. You still care deeply about your family. You still are able to find peace and solace in the simplicity to which your life has been distilled. You still give us advice…because you know we’ll always need your wisdom. Even now.

Right. So yes. We knew it was coming.

What?

Oh, yes. You are on hospice care. And they had kind of given us some idea of when things would happen. But they were totally wrong.

What? Why?

Oh, because, you know, you have always been a woman of determination, and will, and independence. Your indomitable spirit decides that it is time to go sooner than they said. But we’d had our “tell you everything we want you to know, thank you for being an amazing mom and wife” conversations with you. Whether that’s what you were waiting for; or, whether you just plain up and got tired, flipped the peace sign, and checked out, only you will ever know.

But, well, if you were exhausted, who could blame you? You have been running and running and running forever…probably you came out of the womb running… Maybe? Right? You always said you came out with hot feet.

Huh?

Oh. That’s not what that means? Well, anyway, you’ve been running and are determined to make your world and the world of those you love a better place since your borning cry on February 6, 1937. Did you know that the sixth of February is the 37th day? That had to be some kind of numerology good luck. You’ve said over and over again that you were the luckiest woman alive. So maybe that’s why? Oh, and for the record, that was a Saturday. It always makes sense now why you were a Saturday person.

Have you seen your mom and dad yet? You’re all together now, right? Sure. Yes. Anyone reading this might want to know…

Parents: Vernon and Myrtle (Pike) Peterson.

Did you just ask how we’re doing?

Legit LOL’ing. Only you could ask that question in such a genuine way not realizing how crushed we would all be when you left.

Yeah, so, pretty much we’re devastated, destroyed, and decimated.

How could you even ask “why”?

That’s like asking “is water wet”?

Sorry. Sorry. Definitely didn’t mean to be rude. But it was a silly question. You were the glue, the sauce, the tie, the binder clip, the staple, the tape…you were the thing that was holding our lives together. And no, we’re not kidding. You are the hero of your own story.

But have you seen them? Your parents? Yes? Good!

Did you catch up with Ed?

How bout Mary? Nadine? Betty? Ruth?

That just made us smile. We’re so glad you’ve found them all. Found your people.

You were always a collector of souls.

What does that mean?

You know. The door of your heart is always flung wide to souls who call to you.

Not sure how you know, but you somehow always do, that someone needs a little extra. A little extra love, time, attention, a kind word, a card with a totally spot on quote clipped from a magazine, a hot meal, a hug.

Oh man did you give the best, best hugs. Like, yeah, you said that you always wanted to be more demonstrative than your parents were…pretty sure you got that hugging thing down pat. We hope you hugged them until they squirmed. LOL. Those hugs of yours are going to be so, so very much missed. We’re going to miss you digging in like a tick and not letting go. It’s like you took any sorrow or worry away with those hugs.


*sigh*

Oh Mom, we miss you so much already! There’s this empty crater where the “living you” is supposed to be. It’s just dark and filled with loss and lost-ness. It sucks, frankly.

We know. We know. We don’t blame you for leaving. You had to go. God saw how tired you were. He swung the gates open and said, “Good job, Faithful Servant. Welcome home, Yvonne.”

We. Co-sign. God.

Yep. Of course we’re crying. But we can suck it up.

So you’re a soul collector. We just want anyone reading this to know how much you give of yourself, always and freely. Your people never hesitate to call you in a time of need. And you never hesitate to pick up. You always prevail with a cool head and a very warm heart. You’d answer the phone at all hours, listen for hours, like really, really listen, not just the kind of listening where you’re waiting for an opportunity to jump in yourself. And then when your person is done, only then do you respond.

Please stop interrupting, Ma. We’re not embellishing.

So, can we tell everyone about you now? Is that okay? We mean, we know you’re not one for attention, but we’re kind of ready to drop it all down about you and your beautiful soul. Can we do that?

LOL. Well, that was a begrudging “yes.” We know you only agreed because you know we were going to do it anyway.

So, here we go.

Maybe every kid thinks their mom walks on water, but ours really did. Frozen and wet. She water-skied. She snow-skied. She and the love of her life taught their kids to do the same.

Shoot. Yeah. Right. We should start a little farther back. Because maybe someone reading this has no idea who the love of your life is or how he came into your life.

So let’s back up. Wayyyyy back.

Yvonne’s parents move around…a lot. Like AAAA LOT. So after bouncing around a ton of schools, she was over-joyed to spend the last three years of high school in one place, graduating from Lodi High School in 1954. She loved school. She loved learning. She knew that education was the way for her to make a good life.

Her dad, bless his soul, did not believe in education, so Yvonne worked three jobs to pay for tuition at the University of Wisconsin-Madison. Though, she will conspiratorially tell you that her mom (a graduate of Wisconsin Teacher’s College) tried to help her where she could. Because unlike her dad, her mom did actually believe in education. So onto Madison Yvonne goes in the fall of 1954. She loves everything about living in a dorm, being on campus, learning. She loves learning. That’s been said already, but cannot be emphasized enough because that love of learning carries through and weaves itself into the fabric of her entire life.

So she’s at Madison. Doing her own thing. Creating her own jam. Majoring in Business Administration with an emphasis on accounting. And then she returns from Spring Break in 1955 and her friend yells down the hall asking if anyone is interested in a blind date.

Yvonne thinks (quickly, because that’s how her mind is) “No homework. Sunday night. Late class. Perfect.” And then she yells back, “I’m in!” Well, we really don’t know what she yells back, but that’s not important.

Here’s what is. Here’s what changes the course of her entire life…the next sixty-five years of it.

“Who are the fellows?” she also yells.

“Well, there’s Ron Labott and Don Kaelber.”

And Yvonne, again with the quick thinking, replies, “Well, I know Ron Labott. So I’ll take the other guy.”

Sorry, Uncle Ronnie.

And so they go. Out, that is. We still can’t get a straight answer as to where they went, what they did, or how it ended. But what we know is that at the end of the night, Don asks, “Can I call you to go out next weekend?” And she says, “Yes.”

But then… the next night, he calls. And breaking all the rules of dating, they go out that night. And the next. And the next. And the next. And pretty much most nights after that. And the rest, as they say, is history.

What?

Oh right, Mom.

She wants us to tell you that she is the happiest woman. She gets the man of her dreams and the life that she pretends to have when she played with her paper dolls as a kid.

So they keep up a wild (by 1950’s standards) romance and by December 1956, they are engaged and she is giddily sporting a rock. That’s probably the only time anyone will ever describe Yvonne as giddy. But she often tells the story of flashing that ring whenever she could. She is just so happy.

Boy meets girl. They date. They get engaged. And then they get married on September 7, 1957. She is a beautiful bride. Like truly beautiful.

But just because she’s got the man, she ain’t giving up on her education. They move to Kenosha. She transfers to UWM. Walks to the train station everyday and commutes to Milwaukee. Somewhere around April,1958, she’s not feeling so hot. And well, as these things do happen to newlyweds, she’s pregnant!

But.

Yes. But.

She’s not giving up on her education. She pushes through morning sickness, at one point tossing her rainbow cookies into a garbage can in the hallway at UWM. She always said she felt so sorry for the janitor having to clean that up… That’s the kind of person she is…she’s sick to the point of vomiting but she’s worried about the person who has to clean it up.

What, Mom? Yeah, we know. If we keep going into every detail, we’ll be here forever.

So what should we tell them?

Sure, we can do that. (She asked us to abbreviate and move along quickly. She hates the attention.).

She graduates with honors. Incidentally, she is the only woman to graduate in her degree program that year. Later she goes to Carthage College for her education degree. She has five kids, all of whom she has said have brought her and Don “joy and pain.” But of whom she is proud. “Extremely,” she says, “Underline that.” And later, she completely falls in love with her eight intelligent, kind, and driven grandchildren.

As those kids grow and become real human beings, she and Don purchase a lake house and then move to a second. That’s where they meet other lake folk interested in starting a water ski show team. So they do. The Aquanuts is born in 1972. At which point, our Yvonne, beloved collector of souls, throws the doors open to the summer cottage, collecting souls like rain drops in a bucket. If any kid needs an ear, a meal, a hug, a ride home, or just a smile so they know they are seen, she gives it.
The summer cottage turns into a whole new world. Between the ski team and her tutoring kids how to read, she has found her groove.

She wastes nothing. Her mother teaches her that. Don’t waste your time, talent, education, tears, life. Just don’t waste it. And she never does. If she has anything to give, she gives it. She becomes treasurer of the ski team. She takes leadership positions in the AAUW and the Kenosha Choir Boosters. She becomes a member of the Kenosha Historical Society, Friends of the Kenosha Public Museum, Friends of the Kenosha Library, and Friends of the Lighthouse.

She serves in various show ski official roles: Secretary of the Wisconsin Water Ski Federation, Certified Tournament Scorer, Tournament Chairman, and becomes an Honorary Lifetime Member of Aquanut Water Shows.

She worked, as noted, three jobs in college. And then later she works as a secretary at the First Presbyterian Church for almost ten years. Then serves as an administrative assistant at the Kenosha Hospital.

She saves *everything.* And ninety percent of the time, all the stuff she saves winds up being used somewhere, at some point, in the future.

But that burning desire not to throw in the towel because she had the man of her dreams or that first baby on the way? That burning desire to learn, to be educated? It spills over into everything. Into teaching her kids how to read and instilling in them and her grandchildren a life-long love of reading, to learning how to needlepoint and cross-stitch, to weaving amazing baskets, to doing calligraphy. She teaches herself to garden, and to sew, and to paint, and to scrapbook. She teaches Bible School. She opens up worlds teaching kids, not her own, to read. She learns about flowers and birds. And she knows every bird call.

She learns how to flip her crazy huge, vinyl record collection onto cassette tapes so she can take her love of music wherever she goes.

Right, Ma. We gotta talk about music. If we don’t we’re skipping over a HUGE part of your life.

Though she will tell you she couldn’t hold a tune in a tin can, that’s not true. She can sing. It brings her joy. For a while, after her strokes, singing is the only way she can communicate verbally.

Right, sorry, Mom. Moving along.


She is a fan of everything…classical, jazz, rock, country, and punk…yes, punk…and, yes, country. Who could forget driving through The Smoky Mountains in the van pulling the ski boat on the way to Florida? It’s the middle of the night, she always takes the night shift; and always, always, she has The Outlaws playing through The Smokies. And then she switches to The Ramones, The Clash, Devo, and The Police. The Beatles are big for her. She loves “Yellow Submarine.” Musicals. Christmas music. Kids music. You name it. It seems like growing up, there is always music playing in our house.

Hey, do you remember dancing around in the kitchen to “Put Another Log on the Fire”? You wore that fuzzy pink bathrobe? Oh man, that’s one of our favorite memories!

Her vinyl collection is a thing of beauty. Pink Floyd, Patsy Cline, Barbara Streisand, plus everything we talked about above, and geez, so much more. Charlie Daniels, The Sex Pistols, The Sound of Music, The King and I, Annie, John Denver, The Kinks, The Beach Boys, Harry Chapin…all of it!

Treks to music stores are such a wild ride!

Her and Don’s love of music fosters everyone else’s. All her kids love music. And even if they don’t like all of it, they learn from them to appreciate it.

Yes. Yes. That was next, Ma.

She told us not to forget to add Christian Rock to the list. And that happened because in 2001, she and Don become charter members of Spirit Alive Church! She joins the women’s bible study and the book club. She bakes countless loaves of unleavened bread for communion. She collects souls and friends and hope. And, yes, she falls in love with Christian Rock music. The service is contemporary and the music matches. She is hooked almost immediately. Finding Spirit Alive is one of the best things for her and Don. They find a home in the arms of God. They find community. And in a way, they find each other again.

She and Don travel.

What, Mom?

No, we know. Not extensively. Not as much as some couples. But you did. You traveled. We think when we did it a few years ago, we figured out that you and Dad only had like five or six states that you hadn’t been to. So, you know, that seems like a lot of travel to us.

Right. Yes. We’ll tell them.

She wants you to know that their Alaska cruise is her favorite trip. It is two whole weeks of just her and Don. It is a completely different adventure from any other they’ve had. She calls it “the trip of a lifetime.” And it truly is. She says she’ll always remember the flowers that were everywhere in Alaska. But the glaciers and the sled dogs and the train to Denali are things she talks about often. But seriously, if we’re being totally honest, we think the trip was just as much about who she was with as the sights they saw together.

Sorry, Mom. It’s true.

She also combines her love of travel with her love of learning. Every Fall for a very long time, she roadtrips with her great friends, Ginger, Betty, and Nadine to Stratford, Canada for the Shakespeare Festival. They see about seven plays in a week. Can you imagine? That’s a lot of Shakespeare. She sees almost every Shakespeare play, noting that some of them just really aren’t that good.

Speaking of plays, oh man, how many times do she and Don take the kids to Chicago or Milwaukee to see a play or musical? Like dozens? And then every summer, she and Lora head up to APT for more Shakespeare, Shaw, and Molière.

She loves live theater.

Plus, she and Don had season tickets to Lincolnshire for years. Phantom of the Opera is one of her favorites. And Miss Saigon, she loves that one, too. But she likes the smaller, more intimate productions, as well. The Patsy Cline Story that she and Don and Lora see at The Stackner has her reminiscing for days.

What we’re trying to say is that Yvonne is open to everything, new things, old things, everyday things. She just wants to be moving and doing and learning and seeing. She never stops. Even in these last years where that is harder, she still paints and explores. She loves being read to.

If you’re still reading, we hope you’re getting a good sense of who Yvonne was and how she’ll live on in everyone who’s ever spent any time with her.


We haven’t, we think, spoken enough about the love that she and Don share. In her journal entries, the few that there were, every single one notes how lucky she is to have found Don. That she is blessed that they’ve been able to raise their kids with love and affection. That their kids would always know they are loved. She says that she is joyful that Don always indulges her and denies her nothing. But, it should be noted that Yvonne being the frugal woman she is, never asks for anything insane. Even when they purchase the house of her dreams, she is cautious, making sure they have enough money not to be house poor, before actually getting truly excited.

And we can say that in the last six years, if anyone, anywhere ever doubted how much they love each other, those doubts are annihilated. As Yvonne’s life is distilled down to the simplest things, the best thing in her life is Don. The smile she throws him the first time she sees him during the day would melt your heart.

Oh Mom, come on, that’s not embarrassing. That’s inspiring. To be able to hold on to that love during grave illness is a gift.

Anyway, it would. It really would melt your heart. And continuing their life-long devotion to each other, Don never flinches. They both roll with every loss…loss of life-long shared memories, not always knowing who he is, inability to speak after a stroke, loss of her ability to walk on her own…every single loss comes, they mourn it together, and employ the motto “Forward.”

Always forward.

Still. We’re just not capturing their love quite right.

Agape. The love of God through humans. That’s it. That’s what they had. There’s really no other way to describe it. When she looks at him and lights up, he is her whole world. And when he sees that smile, he sees nothing but how beautiful her soul is and how much space she happily takes up in his heart. They give each other what no one else can give them–a little piece of God’s heart.

Yeah, Mom, we’re wrapping up. Just a couple more things.

When she is little, she loves being outside in the summer. She explores the world around her voraciously. She collects monarch caterpillars, bringing them home and stealing her mom’s mason jars. Which her mom isn’t too happy about. But knowing Yvonne, we know she thinks about the repercussions of that for all of two seconds, and steals the jars anyway. She knows that once the caterpillars are in the jars, her mom won’t toss out those l’il creatures. So Yvonne raises them to butterflies and releases them.

Flash forward forty years, she’s got this amazing summer cottage with a flower garden. She insists that there always be milkweed plants there for the monarchs to lay their eggs.

And then last week, Lora finds a monarch (Butters) that had been injured by the waves and rocks at the lakefront. She brings Butters to Don and Yvonne’s house. Butters can’t fly, but she can walk. She walks up and down Yvonne’s arms, making her smile for a few days before Butters moves on to the milkweed in the sky.

We feel like butterflies and monarchs are going to be her sign to us…that’s she’s good. That she’s watching. That’s she protecting, loving, and praying for us.

There are pages and pages more we could write. But we think we’ve captured our mom, Don’s wife, freaking incredible woman.

Yvonne is survived by the love of her life, Don; five troublesome, but adored, children: Edward (Amy) d.2018, Elizabeth, D.J. (Tara), James (Beverly), and Lora; eight incredible and beloved grandchildren: Eddie, Kelly, Shelby, Megan (Michael), Raven (Corey), Madie, Casey, and Will; two beautiful, great-grandchildren: Wyatt and Jaxon; and her adventuring, younger sister, Priscilla.

She would not want you to be sad for her for long. That wasn’t her way. So when you think of her, think of her laugh, the sparkle in her eyes, and those big hugs.

Yes, Mom, we’re finished. We love you.

So very much we love you,

Your Family

Dreams, Darkness, and the Final Inning

Sunday, August 23, 2020.

It is 3:30 on Sunday morning. I am sobbing. I woke up this way. A dream so dark and black and lonely that I started sobbing in the dream and dragged the darkness to the surface with me.

A dream so isolating and utterly desolate that sobbing is the only thing I can do to try to dissipate that darkness.

In the dream, my mom is sitting by herself. On a train. By the window. Something has happened but I don’t remember what. But it’s something that has caused her to be ostracized. Laughed at. Something that she couldn’t help. Couldn’t change. But something that is nonetheless a part of her now.

I get the sense that not only had I been bullying her, but also that I had a complete lack of understanding about how it felt to be her. To have this thing happen to her.

I get the sense that I am a huge part of the reason she is now alone on the train wearing her sunglasses to cover up her tears. But they escape from under her glasses anyway and slide down her cheeks. Whatever it is that has happened, she is broken. Utterly and completely devastated.

I look at her. Taking in the way she is sitting. Understanding that she is trying to shrink into her seat so that no one will recognize her and mock her all over again. I am slammed with guilt. I can’t breathe.

Every mistake I’ve made the last six years. Every bit of every piece of every mistake, lack of patience, snippy responses, every instance of my inability to climb in the boat with her, every second of lacking empathy. Every single time my irritation got the better of me. Every time my words flew out of my mouth before I thought about what I was saying. Every mistake. All of them. I remember all of them and they are steam-rolling me.

And suddenly, I know unequivocally that she remembers them, too.

I walk to her and sit next to her. I take off her glasses so I can see her eyes. They are a mixture of pain and love and hope and fear and hatred and sadness. But they are predominantly filled with confusion.

There is a moment where neither of us breathes and then she takes my hand like she always does. She pulls me closer and rests her head on my chest.

I whisper that I am sorry.

It’s all I can think to say.

But what I want to say is that I’m sorry I wasn’t a better person. I’m sorry that I wasn’t cut out to be a caregiver. I’m sorry that I failed you at least once a day. I came up short in my own expectations, so I know I fell well short of yours. I’m sorry that so many times in the middle of the night I didn’t let you be you…instead begging you to sleep and telling you that we couldn’t keep doing this. I’m sorry that I made you feel badly for all the things you couldn’t help. I know I did. You know I did.

I’m sorry that for all the great times we carved out the last six years, in the last two, we had so many moments where we didn’t understand each other, where we didn’t connect, where you got frustrated and I got impatient. I’m sorry that sometimes at the end of the day, I felt relief that you were finally in bed and I could breathe for the first time all day.

I’m sorry for all those times we’d just gotten ourselves buckled into the car and you said you had to pee and I couldn’t contain my disbelief and frustration.

I’m sorry for all the things we had to do to keep you going…all the breathing treatments and medications and percussion vest treatments.

I’m sorry for all the times you must have felt small because you didn’t get a choice. I’m sorry for all the times I told you had had to do something and you said no and I made you do it anyway. I’m sorry for all those times I spoke to you like you were a child and I your parent because the truth is, you have never stopped being the parent.

I’m sorry for all those times, and there were more than I want to admit, where I was a horrible human being, an awful caregiver, and a crappy daughter. I’m sorry that caregiving for me has been such a beautifully cruel dance between getting it exactly right and being an asshole.

I’m sorry that I couldn’t do this the way you would have done it…with a heart always filled with love and patience.

That’s what I wished I’d said.

But instead, all I could say was I’m sorry.

She starts to say something and that’s when I wake up.

Sobbing.

Suddenly, I don’t want to live past our goodbye.

The guilt is crushing.

The depression real.

The exhaustion disorienting.

I’ve had dreams like this before. Where I wake up sobbing. They are always dreams where my mom has died. But in reality, she’s always been very much on the life side of the equation. And I’ve been able to check myself back into reality with that knowledge.

But I realize in this moment that the next dream I have like this will be in the after. She won’t be with us anymore.

I start sobbing all over again.

It’s not a surprise to me that I’m feeling all the things I am.

As my therapist said Friday, I have never been under more stress in my entire life. And that’s saying something. My auto-inflammatory and auto-immune issues are in almost constant flare. In addition to a plethora of issues including joint swelling, pain, fatigue and fevers, I’ve got rashes…quick and dirty. They happen from taking a shower, sweating, being in the sun, being hot, being cold. They burn and itch for an hour, sometimes longer and then they go away. This has been happening everyday for the last two weeks.

This stress, plus my mom’s decline has caused me to start using food as a crutch…again.

If you know me, you know for years I dealt with anorexia and bulimia. Food was an obsession…the denying of it meant control. The eating of it was filled with pleasure. An addict. And lately, I haven’t been able to stop thinking about it, stop shoving it in my mouth. I’d eat dinner. Then dessert. Then another dessert. Then another dinner. And more dessert. If I was at my parents, I was heading to the fridge and just shoving food (anything) in my mouth for the dopamine rush of it.

Consciously doing it. Guiltily doing it. Shamefully doing it.

Honestly. I’m a mess. But I’m admitting it and getting help.

And then, Thursday.

Thursday our lady’s oxygen levels dropped into the low 80s. She became agitated and spoke gibberish. She was still in the palliative part of the hospice program, so while we called hospice, there really wasn’t much we could do.

We really did think we were heading into her final at bat. And I started to re-live the last six years. The great times, the soaring emotions, the bad times, the ugly, and the everyday.

But her oxygen levels start to come back up after turning her machine up another 2L. In that moment, it wasn’t about prolonging life, but about providing comfort. And it did. Her agitation calmed.

It was a wake-up call for us, though. We were completely unprepared to help her in these moments. Moments that will increase in frequency as the infection she can’t fight takes over. As her disease progresses.

The Hospice Alliance was amazing. They called first thing Friday morning to begin the process of admitting my mom to the hospice part of the program. I had an appointment scheduled with my therapist in the afternoon and they understood how important that was, so they came out well in advance of that.

By Friday at 5:30 p.m., all their equipment was delivered. Modified wheelchair, hospital bed, a new oxygenator, and portable tanks.

When I got home at 6:30, a hospice nurse was already on her way to teach me how and when to administer comfort medications.

By Friday night, my mom was back to herself…usual, unusual, but coherent.

We all (me, Dad, and the caregiving team) collectively breathed a sigh of relief for the gift of more time.

But we know that somehow we flew right past the seventh inning stretch and wound up in the ninth without even realizing it.

After Thursday night, we get that we are taking our last at bats. Our time together is much shorter than we thought.

But no one wants to see her suffer. No one wants her to be in discomfort and agitation not being able to breathe more than we want her to be at peace. And if at peace means not in this world, as hard as it will be to say goodbye, then that’s what it means.

If my dream has given me any wisdom, it’s that. I’ve made so many mistakes the last six years that can’t be changed, but can be learned from.

I’m determined to do this part right, to help her say goodbye with love and strength and a calmness I don’t normally possess.

So here we are, in the final inning, flying blind, but with guidance from hospice nurses and doctors. And trying desperately to keep our home and hearts filled with hope and love.

The Talk

July 15, 2020

When we first found out about my mom’s prognosis, I was talking to my best friends. And Suzie, looking on the upside of things, said that it was good that we had time. That way, she said, you can tell your mom everything you need to say.

And I kind pshawed it saying that I think I’ve pretty much said it all.

But then Monday came around.

I went to get my mom up around 1:30, per the norm. Maybe it was a little early because we had to leave so I could get a Covid test for a procedure Wednesday.

She was her usual smiley self waking up. (I so did not inherit that from her, I snarl and I’ll bite your hand off.). She lollygagged a little and then sat up.

Sometimes if I forget to sit down and badly sing “Baby Mine” from Dumbo to her, she won’t stand up. Which was the case on Monday.

So she sat. And stood. Waiting. Until I remembered.

I sat down next to her on the bed and she snuggled in. Bad rendition of “Baby Mine” complete, my mom wiped her eyes.

She was crying.

My mom.

My iron mom.

Crying.

I didn’t say anything, I just sat there. Dumb.

She dug in like a tick snuggling her head into the crook of my neck and pushing her whole body up against mine. Unwrapped my arms around her trying not to cry.

Failed.

But then the words just started coming.

“What an amazing life you have. You know that, right?”

She nodded.

“I couldn’t have asked for a better mom…a better best friend. The perfect Louise to my Thelma.

“OMG the things we did! The trouble we got in.

“You remember that time we drove from APT to the Dells when it was storming? There were trees down all over the road and the wind and the lightning? And Dad told us how crazy we were because there had been wind shears in the area? And we were all like ‘What were we supposed to do? We had nowhere else to go’?”

“Or that log cabin in Mineral Point? With the loft? Where every time we had to pee in the middle of the night, we had to climb down that treacherous ladder?”

I laughed through tears I really didn’t know
were there until that second. “Oh man the times we had! How many plays have we seen? At least a hundred?”

 

She nodded. Maybe we had. Maybe we hadn’t. But we’d sure seen a lot over the years between musicals and plays in Milwaukee and Chicago with my dad and plays at APT just the two of us. If we hadn’t, she sure has with her annual ladies trips to Stratford, Ontario to see Shakespeare and Shaw.

I stopped. I had to wipe my nose.

“I’m not sure why I’m crying,” I croaked, “but my nose is really running.”

She waited.

And then she started rocking.

“Do you remember the hours and hours and hours we used to swing on the green swing at the lake?” A bench swing between two trees facing the lake. I’d lay my head on her lap and we’d swing. She’d sing. I’d eventually fall asleep.

“I’m really not sure if you really liked to. I kind of figured out that this was probably the only way you could get me to nap.”

She rocked a little harder.

“And all those picnics we went on? To Boyscout Island? Those were the best. I fell in love with turtles and orange Kool-Aid there.”

She’d pack a lunch for my brother and her and me, and we’d load the paddle boat up with our supplies. And she and my brother would paddle over to the island. I don’t know that it was truly an island so much as an undeveloped hill on the lake maybe once used by Scouts. It was sandy gravel and turtles liked to come up and lay their eggs. You couldn’t get there with the ski boat so it had it to be the paddle boat. And that was a lot of work to paddle that far.

“Oh man and the hours and hours and hours you spent sitting in the boat, driving us around just so we could ski for hours on end.”

I could hear her in my head then, saying, “that was just part of being a mom.”

“Oh and the hours and hours and hours you spent dragging us up Wilmot Mountain on the rope tow just so we could learn to snow ski? Man, you must have had wicked arms!”

She stopped rocking.

I had no idea whether she remembered any of this. But that was my job now, to carry it for both of us.

I laughed then. Because if I didn’t I would start full-on sobbing.

“Oh my God, that trip to New Mexico! Hahahaha!”

She put her head up and turned to look at me with a question on her face…some spark maybe. Then she settled back into the crook of my neck.

“When we tried to get to Taos, and you were navigating? And somehow instead of taking a turn for a different highway, we went the wrong way and wound up down some one lane dirt road by the river? And there was that angry guy with a gun? Jesus, what were we thinking not turning around sooner?”

We couldn’t, for the record. The whole road was a slope and we were in a rental car. The guy was pissed we were on his land, which I totally get. It was one of the very rare times my mom acted like a total ditz. He turned us around and we split. Only laughing when we were back on black-topped road.

Mama Bear always.

“And then we almost started a fire in the room when we thought a fire in the fireplace would be perfect with the snow in Santa Fe?”

I laughed again.

“Leave it to us not to check the damper!

“The O’Keeffe museum was amazing, wasn’t it?” She nodded.

“Oh and remember when we went up to Los Alamos to see where Fat Man and Little Boy were created? Oh man, that road, I was so freaked out and you kept telling me to hush because I was making you nervous driving? And then we pulled over because you needed a break? Those pictures we took were awesome!”

I paused. She didn’t move. Waiting.

“I think New Mexico was my favorite trip. Though, Pennsylvania was pretty great, too.”

“I know you weren’t feeling well…”

The Pennsylvania trip in 2001 is when the constant infections she’d been battling in her lungs reared its ugly head. She’d not been feeling great but wanted to go anyway. We were spending the night in the middle of Pennsylvania between Mill Run and Uniontown.

She’d had a couple coughing fits. Seemed okay and we turned out the lights. She’d gotten up to go to the bathroom and started coughing. And then went back to bed. But when I got up a few minutes later, there was blood in the sink.

So I turned on the lights. She’d not wanted to make a big deal. But there was a decent amount of blood. She said her pulmonologist had told her unless it was a Coke can full, it was okay.

I was not convinced.

We drove back to Uniontown. Spent the night at the Emergency Department. They called it a lung infection. Put her on an antibiotic. And sent us on our way.

“You were such a trooper wanting to continue our trip even though you felt like crap. Falling Water was amazing. And so was the other house, Kentucky Knob.”

“I’m so glad we got to do all those things.”

She’d already been there with my dad, but I had (and still do) a small obsession with Falling Water. She’d fed it heartily.

“But then, I bet Alaska was your favorite trip. Dad says it’s his. I can’t imagine how beautiful that was. And two whole weeks just the two of you. How crazy awesome was that?”

She nodded again.

I’d said something then about our annual trip to Florida pulling the ski boat through the Smokies and singing to the Outlaws. I started singing “Put Another Log on the Fire.” She swung her leg to the beat.

The singing was actually to keep the tears away but as soon as I stopped, they really started to flow.

“I’m not sure why I’m crying. Silly me.” She pushed in closer.

The fans had been blowing on us. I moved my hand up her arm and her skin was cold. I grabbed her fuzzy blankie and wrapped it around her and she tried to make the non-existent space between us even more non-existent. She started swinging her leg again.

“You are such an artist,” I said. And her leg stopped swinging.

“With the painting, and the needlepoint, the calligraphy, and the cross-stitch. Oh man, my tree skirt is a masterpiece! And all the scrap books!

“Man, you’re a busy lady!”

And you were at every concert, every game, every play and musical and track meet. And jeez every single water ski show and tournament. You were there for everything. You didn’t miss a single thing. You just have been exhausted.”

She nodded.

And it occurred to me then, sitting there holding onto her, she burrowed in for safety, that we’d been here before. At a precipice of life change, except my mom had been holding me together. And I knew how I’d felt then, someone else holding me together. How safe it had felt.

So we just sat for a few minutes more. Rocking. Silent.

And then I asked her the one question, I had left to ask.

“Your life has been amazing.”

She nodded.

“Would you change anything?”

She stopped rocking.

Head burrowed into my chest, she shook it hard.

“No…. No.”

And just like that I had no more to say.

Help! Help! She’s Trying to Kidnap Me!

Our day starts like most of them have the last couple of weeks. 

With unknowns. 

Will she know me?

Will she be her? 

Or is this alternate, manic Mom? 

Will I be strong enough to get through the day without losing my composure? 

Without leaving the room?

Without crying? 

Our night was better than most, but still rough. We were up about every hour…she pulled her cannula out a few times. Choked on the fluid slowly building up in her lungs. She had to be sat up and her lungs given some persistent, gentle pounding. 

There was the bathroom, of course.

And a scheduled breathing treatment. 

I wake up at 4:30 a little too relieved that it is finally Thursday. 

After meds and breathing treatments at 7:00 o’clock, she goes back to sleep. Fitfully.

Mom wakes up at 9:30. Earlier than normal. But we roll, right?

After a shower and breakfast, I give her two options for the next part of the day. 

Do you want to hang here until 12:45 when we have to leave for my doctor’s appointment? Or do you want to leave now and go sit by the lakefront for a little bit before my appointment?

Mom: “Well. What would you choose if you were alone?”

Whoa. Surprisingly empathetic and deeper than normal thinking. 

Me: “I’d go to the lake.”

Her: “Then that’s what we should do.”

So that’s what we do. 

It is lovely. Like absolutely. She sits. Watches the waves. Enjoys the wind on her face. The sun on her arms. I hunt for glass within yards of her. 

I give myself twenty minutes to walk, periodically coming back to give her the glass I collect. Which she immediately examines and turns over in her hands.

Eventually, I sit down on the grass next to her and we hold hands until we have to go. 

“That was lovely,” she says. 

“It really was,” I reply.

We head to Froedtert, where it turns out that having a conversation on the lakefront in the wind, while the person calling is trying to change an appointment results in confusion. My appointment isn’t until next Thursday.

My lady is a little agitated in the wheelchair on the way back across the skywalk. Asking if she couldn’t just sit on one of the benches. “Wouldn’t it be easier?” she asks.

I explain that we are heading to the car. If she sits on the bench I’d just have to come back and get her. 

Good thought, though, I say.

We settle back in the car, I give her two more options for the day. 

Do you want to go home now or do you want to go back to the lakefront and get a rootbeer float?

Those rootbeer floats had been our go to last summer. A source of fun and hilarity as my lady usually wound up turning her float into total chaos.

“I’ll do whatever, but a root beer float sounds nice,” she answers. 

“Then that’s what we’ll do,” I laugh. 

Everything is status quo. We order corndogs, a rootbeer float for her and a rootbeer for me. 

I leave her for a couple minutes to wait for our order. She watches the cars and the seagulls.

When I come back, we are all good. She does, indeed, make a mess of her float.

About halfway through her destroying her float, I remind her that she has a corndog to eat…if she wants.

“Ohhhhh. That’s a surprise!” she sort of half squeals.

“Why’s that?”

“Because I didn’t think I’d get one, too,” she says with judgment in her tone.

Here’s where everything in me would like to tell her that the corndog has been sitting in front of her the whole time. But what’s the point? Her brain sees what it sees. And it didn’t see the corndog right in front of her.

She opens the container and immediately dips the dog into her float, dripping custard and rootbeer all over herself. She doesn’t notice, so neither do I.

For just a second, I take a deep breath and think,”This feels so normal.” It is like a moment from last summer recaptured. 

My soul soars.

And then.

The empty outdoor dining space starts to fill up. A quartet of teenagers rides up on their bikes and takes the table upwind from us. No masks.

In fact, I look around and even the people not eating or drinking aren’t wearing masks.

My anxiety kicks up. Mom has finished her corndog…most of it…and she’s dumped the last bit into what was left of her float. But then she starts to try to drink the float through the corndog stick. I give her my rootbeer. Which she happily starts sucking down. 

Me; “So we’ve got to get going, Mom. It’s getting crowded and there are a lot of people without masks.”

Her: “Why?”

For what felt like the hundredth time…

Me: “Because there’s a pandemic with a disease that attacks your lungs. You need to be wearing a mask to protect yourself and others. A lot of people here aren’t, so we need to go, okay?”

Her: “No. I don’t want to.”

Me: “I get that. But we need to go.”

Her: “You can go. I’m going to wait for my husband.” 

Did you catch that subtle shift? 

I didn’t. Not soon enough anyway. 

She called my dad “her husband.” She has always called him “Dad” or to other people, “Don.” She recently started with the “my husband” reference.

And now that I’m sitting here thinking about it, it usually happens when she’s feeling vulnerable. But it also means, when she does it with me, that I am no longer me.

Regardless, I’m not sure that what happened next would have changed at all had I known I was no longer Lora, her daughter.

“Dad’s not here, Mom. He’s at home waiting for us. So let’s get a move on.”

“I’m not going anywhere. I don’t know you. I’m waiting for my husband.”

I do the only thing I can in that moment. I grab my phone and call my dad. I explain what’s going on and put the phone on speaker. Unfortunately, my speaker stinks and she’s hard of hearing on her best days, let alone on a confused one. 

But my dad does try to explain that he’s at home and that she needs to come with me so we can go home. 

Total non-starter. 

I do put her mask on. Which probably doesn’t help the situation.

But I persist in explaining that we’ve got to go. 

She persists in resistance.

Ten minutes later, I do finally get her to get up from the picnic table to transfer to the wheelchair. 

But this happens mid-transfer…

“I’m going to scream! I don’t want to go! I’m going to tell people you’re kidnapping me!”

“Mom, they all just watched us sit here for forty-five minutes. No one will believe that your daughter is trying to kidnap you.”

“YES, THEY WILL!”

Me: “Okay.”

Me quieter, “okay. It’s okay…”

I buckle her in. Which I rarely do. But because of her concussion and her being combative, for her safety, the situation requires it. 

This is absolutely NOT what her mental and emotional state require.

All the way to the car she engages in a tirade of swearing at me and saying she doesn’t know me. I volley back that I’m her daughter. She’s safe. We’re okay. We’re just going to the car to go home. 

“I’M NOT GOING HOME WITH YOU!”

Again, if I am in her brain I would’ve understood that she thinks I mean my home (wherever she thinks that was.).

We get to the car, and now she’s full on in STRANGER DANGER mode.

So I pull out her State ID, my driver’s license, and her car registration.

Aside: We’ve been traveling with her wallet in the go-bag. I threw it in for a doctor’s appointment where we’d needed her insurance cards and never took it out. It’s been helpful after physical therapy where she insists she has to drive. Instead of me being the total bad guy and explaining she has Alzheimer’s and can’t drive, I simply tell her that she didn’t pass her last driver’s test and now has a State ID so she can vote. 

Back to the present… 

I hope that seeing my name and picture and her name and picture along with her car registration will bring her back. 

Me: *showing her our IDs* “See? See my name? Lora Ann Kaelber. And see yours? Estella Yvonne Kaelber? We have the same last name.”

“That doesn’t mean shit. A lot of people have the same last name.”

Touché.

“Hey, okay, well that’s true. But see here on yours? The address? (I read the address to her.). And see here on mine? (Again, I read the address.).”

Her: “So what, people can live-in the same place and not know each other. I don’t know you.”

Well, that’s certainly true. She’s out-logic’ed my logic.

So I try with the registration because earlier she’d said that her car wasn’t her car. I explain that this is really her car. Here look at the registration. It’s got your name on it, I say.

“That doesn’t mean anything. You stole my car and you’re trying to kidnap me.”

To which ensued a “No, I’m not/Yes, you are” argument.

If you’re a caregiver, you’re laughing now because every now and then you just need to do it. Even though this argument always goes nowhere, sometimes you just have to make it known that you are, in fact, right. Or maybe you don’t. Maybe it’s just me.  

But at this point, I just need some steam to leave my head. 

My anxiety is in sixth gear now. Because we’re in the parking lot. The people here didn’t just watch us having a great time eating food together. They don’t know she’s having a reality break.

She is…very loud now. Her eyes are wild. She is not in her body. Her delusion has her firmly in it’s nefarious grasp. I’m just barely hanging on praying no one calls the police. 

With a lot of effort, a lot of yelling on her part and a lot of physical resistance, she does finally get i into the car. At this point, she’s hit me and pulled my hair. I do not hold this against her because I understand she thinks she doesn’t know me. 

It takes me five tries to get the wheelchair in the trunk because she keeps trying to get out. She is a fall risk and so while I’m trying to be respectful of her current reality as much as possible, I also have to keep her safe from herself. 

Hey Lexus, child locks on the front passenger door would be great right about now. 

I understand that some of you reading this are appalled that she got in the car against her will. At this point, I don’t care if you judge. 

She was yelling that I was kidnapping her. My first objective in life is to keep her safe. Right on the heels of that is to make sure my dad and I are being taken care of or taking care of ourselves. 

A contact with the police, in the frame of mind that she’s in, plus the bruises she has from her fall on Monday might lead to further investigation…we have nothing to hide but, honestly, who needs that…? So judge if you want to. I just wanted us in the car and away from people.

Problem is she doesn’t want to be in the car.

So we’re on Lincoln Memorial now almost to the beach house and even though the doors are locked, that doesn’t mean shit. 

She opens the door. 

I’m sorry for the faint of heart about this next part, but…

Me: “JESUS FUCKING CHRIST!!!! ARE YOU TRYING TO KILL US????”

I reach over and grab the door and hold it shut. 

She, for her part, is now shifted into screaming “HELP! HELP! SHE’S KIDNAPPING ME!!!”

And, my ninety-five pound mother is surprisingly strong. She pushes against the door with all her might. 

Thank God for small favors that Lincoln Memorial is almost deserted going north because I have to swerve into the other lane to avoid the door possibly swinging into someone or something.

We battle for control of the door, repeating those same two things…JFC/ SHE’S KIDNAPPING ME!… until I can pull off the road just north of Bradford Beach.

I park and she’s out the door like a shot. Yelling the whole time, “HELP! HELP! SHE’S KIDNAPPING ME!!” 

I run to keep her from falling because Jesus that’s the last thing we need now, right?

“STAY AWAY FROM ME! YOU’RE CRAZY!!”

There’s a guy in the clearing enjoying the sun and a book. He looks up and stands up. 

Me: “It’s okay. She has Alzheimer’s.”

He sits back down, nodding like he understands. Right now, I’m just thankful he believes me. 

She sits down in the car with her feet on the pavement and wails, “WHY WON’T ANYBODY BELIEVE ME???”

“I’m sorry,” I say. “I’m not trying to kidnap you. I just want to get you to your house.” 

“That’s what you say. But I know you’re trying to kidnap me.” 

After about ten minutes of this back and forth, her eyes still wild with fear, I remember that some dear friend a couple years ago gave me the number for the Caregiver Hotline. 

Caregiver Lifeline is what it is. 

Seriously.

So I call it.

1.855.227.3640

And this wonderful woman named Stephanie answers.

She is unprepared for our scenario, but is very calm. She asks me to give her just a second while she looks some things up. Because I’m desperate, I skipp the eye roll that probably would’ve happened otherwise. 

But here’s the thing, whatever resources Stephanie uses to help us, are right at her fingertips. She is knowledgeable in how to find what she’s looking for quickly. It is literally just seconds before she’s starting in on calming both of us down. 

First thing she says is that my mom is panicking. Obvious, right? But hearing someone else say that put a different perspective on it for me. Because in this moment, I am also panicking. 

It is like an epiphany.  

Like: Ohhhh, right…okay. I know exactly what that feels like. And we all know anxiety lies to us. 

So my mom is basically me when I’m having a panic attack, only her reality is super altered to the point of delusion and mine is only altered to the point that my anxiety twisting the truth. 

“I need you to try to bring her back into her body, get her to feel the things around her,” Stephanie says soothingly. 

Hey, my therapist says that. 

“Talk to her about her surroundings. Tell her about the wind and the sun.”

So I do. “Hey, can you see how blue the sky is today? Isn’t that amazing how blue it is? And there aren’t any clouds today. *pause* Look at how green the trees are. And the wind, see how they’re flipping the leaves over turning the trees a different color every so often?” 

I’m used to doing this because this is an exercise I do. (Thanks, Sara!)!

“That’s good. Keep going,” Stephanie whispers. I can feel my pounding heart start to come down a notch.

“Can you see the water. It’s so blue today, isn’t it?”

“That’s great. Keep going.”

So I keep repeating variations on the same theme about our surroundings. 

“Can you try having her take deep breaths?” Stephanie gives me the words to say. Using a five count, I ask my mom to breathe in and hold it. We do this a few times, but because of her lung situation, I know she’s not going to be able to follow me in practice. But she’s sort of listening. 

And then someone walks by and she spins herself right back up again. 

“Help! Help! She’s trying to kidnap me!”

The person doesn’t even look her way, they just walk right by. 

So we start over with trying to ground ourselves in our surroundings. 

“Look at how green the trees are…”

My mom is following my words, but she’s still wildly looking around for other people to help her. She’s gripping the seatbelt for dear life. 

Seeing that she’s using that as a sensory grounder, I get up and grab a piece of sea glass we’d collected earlier. It’s a larger white piece. I hold it up so she can see.

“Hey, do you remember this from earlier today? This piece of glass we picked up on the beach?”

I hold the glass out to her and she takes it. It is our first non-confrontational interaction in about forty-five minutes. 

She turns it over in her hands a couple of times. I have no idea what’s going through her head. She might throw it at me. 

“That’s great. That’s really good,” Stephanie says. 

I almost start crying. The urge is over-whelming.

“Yeah,” my mom says, and she points to a chip in the glass, “and this part wasn’t there.”

I have no clue what she’s talking about, but I agree. “That’s right,” I nod.

I point south towards the place where we were earlier in the afternoon. “We were right down that way when we picked that up. Gosh that was fun, wasn’t it? It was just lovely.”

And again, someone walks by.

“Help! Help! She’s trying to kidnap me!”

It’s a group of people this time and they pause.

Me: “It’s okay. I’m her daughter. She has Alzheimer’s. It’s just a rough day.” I hold my breath.

And just like that, my anxiety is ramped back up. 

One of them says to my mom, “You’ll be okay.”

“WHY DON’T THEY BELIEVE ME?” she moans.

And just like that we’re back where we started and I’m starting to spin out. My heart is pounding. I’m sweating and shaking. Totally about to lose it. 

Stephanie continues to throw out suggestions and we continue to try them. But every time we start to make some headway, someone walks by. 

My tears are breaking through. 

Why can’t she see that I’m daughter? That she’s safe?

Right, I get it. 

Alzheimer’s.

But in this moment, I just so desperately want my mom back. 

And then finally, someone walks by…

“Help! Help! My daughter”…pause of confusion… “is trying to kidnap me!”

A breakthrough. Her delusion is starting to crumble. 

Me: “Did you hear that?” 

Stephanie: “I did. This is good.” 

My mom deflates a little and shuts her eyes. And at that moment, the phone disconnects. Instead of calling Stephanie back, I call my dad. 

I explain what has happened since we spoke about an hour ago. He’s floored. He’s also trying not to laugh because from any outside perspective, I suppose, this is funny. But I’ve literally just walked through hell with my mom.

And we’re still walking. 

We try again to put the phone on speaker. He’s trying to tell her that I’m their daughter. That she’s safe and that I want to take her home. He says that he’s waiting for her to come home. But we’re on Lincoln Memorial and my phone doesn’t connect to the bluetooth in the car…the phone part, not the music part. So she hears none of this. 

“She can’t hear you, Dad.” 

So he and I start running scenarios. My dad is full of ideas in which we somehow tie the passenger side doors together around the column. 

“Do you have any rope?”

“No.”

“Any duct tape?” 

“No.”

“A towel?”

“Yes, but it’s too thick to tie around the door.” 

“What about… is there a child lock on the door?”

“No. We looked into this on Monday when she was getting out of the car. There’s no front seat child lock. And I can’t put her in the back seat, even if I could get her there. I wouldn’t want her to feel trapped.”

“Okay.”

“Like that’s the thing. For some reason, she’s feeling trapped. So even if I could get the doors secured, I wouldn’t want to do that. Plus, what if she somehow gets them undone on the interstate? Then we’re totally fucked. Trying to keep the door shut on Memorial was hard enough.”

“Okay.”

“I just need her to be calm. And I don’t know how long that’s going to take, but that’s what needs to happen before we come home.”

We talk for a few minutes longer. I don’t know if she’s listening to us. Or if she fell asleep and her brain half re-booted, but…

She opens her eyes and starts fidgeting around in the passenger seat.

“Okay. I think it’s time I go,” she says sitting up a little straighter. 

“Dad, I think we might be able to go now. Hold on.”

I get up from my spot on the curb. Fuck! Man is my back fucked from battling over the door. But as I get in, I see her putting her leg up like she’s going to try to get in the driver’s seat. So I slide in quickly. 

She looks at me funny. I hold my breath. “I’m going to drive.” She is adamant.

“Oh, hey, I think it’s better if I do.”

She kind of slumps back into the seat saying nothing.

“I think this is it,” I relay to my dad. “Hopefully, we’ll see you in a little bit. If not, I’ll call you back.”

“I love you,” he says. 

“I love you, too.” 

I ask her to put her seatbelt on and she does. 

I take a giant breath, hold it, and slowly let it out and then pull out into the street. 

The rest of the ride is uneventful. She sleeps mostly. I am resolved to say nothing. I have no idea at this point what might set her off. 

About five minutes from my parents’ house, my mom wakes up, “I’d like to go to the cottage first.” (A home they sold in 2009.).

I grip the wheel tighter, keep my eyes straight ahead and pretend that she hasn’t said anything. We’re still on the interstate. Whatever I say could trigger her. 

I can feel her staring at me, waiting for an answer. But I am resolute. We are not going to go through this again. She gives up and looks out the window. 

I am fifty million shades of a hundred thousand different emotions as we pull into the garage. 

As I help her out of the car, she asks me what’s wrong. 

I should have taken a breath, but it just flies out, “We just spent an hour and half in Milwaukee with you yelling at strangers that I was trying to kidnap you. I know it’s not your fault. I know you can’t help it. But I’m sorry. I’m fried and a little hurt. So I’m sorry that I’m not myself.” 

The look on her face was *not* one of complete lack of recognition like she sometimes gives when someone asks her if she remembers something. It’s not blotto. 

The look she gives me is one of total recognition weighted heavy with regret. 

She pauses. I can see her stomach dropping to the floor.

“All I can say is that I’m sorry. I don’t know what happened.”

“It’s okay,” I say. I move toward her and she buries her head into the crook of my neck. She grabs on to me like I’m the only thing holding her here. And we stay that way for a minute. Maybe two. 

There are two hours left in my week. Two hours before Claudia gets there. I’m exhausted and edgy. She can tell. It’s great. 

I skip sitting down with my parents for dinner. I just can’t. I need some space. Plus, all the stuff I wanted to get together to take with me back to my apartment for the weekend is still scattered everywhere. Literally. 

Finally, at about 6,40, we’re sitting in the family room and I realize I’m not going to see her for three days. This isn’t her fault and whatever I’m feeling is my baggage, not hers. 

So I ask, “do you want to come snuggle with me on the couch?”

It takes her a couple of tries to understand what I’m trying to say. But she moves over to the couch and snuggles in. We sit like that until Claudia comes.

I cry quietly. Tears a

roll down my cheeks. Snot threatens to drip out of my nose. 

I tell her I love her. “I’m heading back to my house for a few days. But I’ll be back,” I say.

“I hope so,” she says.

“I will. I love you so much.”

“I love you, too.”

I say goodbye to my dad and when he asks when I’ll be back, I jokingly say never. 

The longest week we’ve ever had together has come to a close. We’re all exhausted. 

Alzheimer’s has kicked our asses this week. I mean that literally. Pounded us into the ground time and time again. My body is literally battle-worn. I can hardly bend over. I have a bruise on my leg from where she kicked me.

But here’s what I know…This, this right here, this is what love is. It is unconditional. It is hard. It is fierce. And it happens despite everything. Or maybe because of it. It is a force with which to be reckoned. 

Alzheimer’s can knock us down all it wants, we will always rise again. We will always be here standing resolute in love.  

Always.

This was from earlier in the week.

Caregiving

This day began Sunday at 4:30 am. It is as long as our longest day together and getting longer.

This morning after zero sleep, my lady insisted that we “get to Twin Lakes.” The kind of insistence that cannot be distracted. So we piled into the car in pajamas to go to Twin Lakes.

I dreamed of donuts on our ride. Of Bode’s delicious donuts. Exhausted. But donuts.

But Mom. In one of those moods where listening is more of a mild suggestion. So I asked her to stay in the car. Locked the door and went in.

Hey. Oh. Yup. That’s my car alarm.

swear

As I ask her to please please stay in the car, some part of my brain wonders why I want these donuts so badly. But I do. Maybe I need the dopamine rush. Still. They’re out of reach because I know she’s not going to sit.

So I’m about to get in the car when a woman with her young son offers to watch my mom while I grab donuts after I explain about the Alzheimer’s and not sleeping.

OMG. Really? Who are you guardian donut angel.

But wait it gets better.

So I stand on line, anxiety flaring bc it’s Bode’s and it’s packed.

I turn around and watch this kind angel soothe my mom and keep her distracted.

When I come out she tells me she’s a nurse. Or maybe she did that initially. Either way she asks some more questions. I tell her about being on palliative care. And she’s full of ideas of different combos of meds that might help. She truly was a godsend in the moment, in the day.

We drove back to the house and my lady was no less anxious and off the chain than when we left. But what are you going to do besides swear, be frustrated and just try to roll with it?

She keeps forgetting who I am. So I’ve come up with an alternate persona. My name is Sam. I’m a caregiver. She talks about her 8 year old daughter, Lora who would love my hair. And about how her mom is still up north. She laughs when she says that Lora likes to dance.

Because she’s so antsy, I decide to take her to the beach before my rheumatology appt today.

So we’re there like maybe five minutes and I look up and see someone who looks so damn familiar…from afar.

Hello, Bestie!! Just what this heart needed. A hug, a conversation. Time spent just together. It was another godsend moment.

And then it started to rain. So we left. We stopped at my apartment to pee and quick change clothes before heading to my appointment.

But my lady had other plans. Remember about listening being a mild suggestion? Yeah, so I asked her to stop and wait for me while I locked the door.

She didn’t. She performed the most amazing dismount from her walker I’ve ever seen. There was a spin even.

Problem was the wall jumped up and cracked her head …twice.

Out. Like. A. Light.

An ambulance ride later, we have been at Froedtert for five hours and counting. Everyone has been amazing.

For my lady’s part, she is fiesty as hell and ready to go. She’s asking for my dad who can’t be here because visitors are limited to one.

For my part, I’m exhausted and ready to eat my own arm.

She has a concussion…We’re waiting on the results of a CT scan to determine if the compression fractures in back are from today or older and if she needs a brace.

I’m sure she’ll be fine in the end. She’s Teflon, after all. That’s her superpower…well, one of many.

We still have to drive back to Pleasant Prairie, do meds and breathing treatments and then see if sleep will join us for the night…even for a little bit.

I’ve never felt more ready for Thursday night when Claudia comes on duty.

But it’s Monday so I’ll day dream about donuts and the beach and sleep. And I’ll thank God for the small gifts of today.

Anger in the Waiting Space

Tuesday night, I was angry. It wasn’t all day and it wasn’t for very long. And for a hot minute, I couldn’t really figure out why.

Earlier in the day, my friend Dan had sent a link to a tweet from someone who followed me. She’d taken a photo I’d posted of my mom painting and added the caption “A virus that is particularly threatening to the older generation continues to loom. Yet up and down the country, life goes on.”

Uh.

Yeah. No.

Just no.

She claimed because it was in the public domain, it was free for the taking.

Um.

Yeah. No.

Just no.

It was a fairly quick interaction. Invasive. And stupid. But quick and dirty.

Still given that we’d just signed up for palliative care through hospice…life wasn’t just going on. So my anger lingered.

I went about the rest of my day. But when my mom chose to take her pills orally versus having them crushed and put in pudding, and then refused to take them, I got snarky.

It’s an old frustration. Her doodling around and tossing her pills on the floor in lieu of putting them in her mouth. It’s not that she doesn’t want to take them, it’s that she knows she controls the situation. She knows I wait on her to take them. And she knows I can’t go anywhere until the pills in her hand go in her mouth.

We’ve been doing this dance for four years.

But Tuesday night, I found myself more irritated than I normally am by this dance. I was actually a little angry. Still.

And when she finally had swallowed the last of them, and she was doing her nebulizer treatments, I sat back and let out a long sigh.

Why today, why this moment, why did that make me angry?

My answer is this: I’ve had moments where this disease has pissed me off. But I don’t think I’ve ever really moved through the anger stage of grief. I’ve never really gotten angry over the slow, plodding, destructive loss of my mom.

And Tuesday night was the culmination of a few days of building anger. Sunday night my mom had been kind of a dick.

There are times when she’s a dick and she doesn’t know it. But Sunday night she was an intentional dick full of sarcasm and meanness. At one point at 2:30 in the morning after she told me I was funny looking and had really never been a very nice person, I told her that she was being an asshole. To which she laughed and said, “Oooo you said a naughty word.”

I laughed. But still, I was angry. Angry that we were still up at 2:30 in the morning. Angry that she was being a total dick. Angry, in that moment, that this was my life and I hated it.

So Tuesday night after having to protect her and her image from some clueless hack on social media, it seemed like just one more thing on the long, long list of role reversals we’ve had.

And that, that pissed me off.

Everything was pissing me off.

I’m angry that she’s more my kid now than my mom. I’m angry that the disease made her dependent on me. I’m angry at myself for being angry about that. I’m angry about the thousands of moments and memories of a lifetime that were stolen by Alzheimer’s. I’m angry that we missed so much these last six years. I’m angry that my parents together have missed so much.

I’m angry that this happened at all.

I’m angry that she got sick before I was born, double pneumonia that left her lungs permanently scarred. I’m angry that there wasn’t enough time for my parents to travel like they wanted to when my dad retired. I’m angry that the woman who’s held me together, kept my feet on the ground, now sometimes doesn’t know what feet are and doesn’t know who I am.

I’m angry that we’re nearing the end of this journey and sooner than any of us would like. I’m angry that we’ll have to say goodbye.

I’m angry that we’re in this place now. This waiting space where we don’t really know how to be or act or what to say, or think, or feel.

I’m just mad.

Damn hot.

Everyday I wake up now and I feel it. Anger. And angst. And the question that hangs over us…is today the day? All day long, every single day, I wonder is this the last time we…?

So Tuesday night when I got short with her, I was hit by a ton of guilty bricks because what if these were the last words and emotions she had from me?

Truth be told, I think this a hundred times a day about everything. Last time I sing Baby of Mine when she wakes for the day? Last shower? Last time I hand her her toothbrush? Last breakfast?

I’m driving myself fucking insane with guilt and anger and resentment and anticipatory regret and sadness and all of the 50 million emotions crashing into me all day long in this damn waiting space.

As my dad said this week, we are wound up tight.

There are a ton of books out there on hospice and end of life. And living well on hospice. I took a class on living and dying in college by a professor who helped bring hospice to Kenosha. I get the five stages of grief. I’ve lived through them through the loss of a best friend, grandparents, a brother.

I get them. I understand them.

But here in this waiting space, I’m not sure how to process this kind anger. Virulent and persistent and never-ending.

It’s a space where death is impending, perhaps imminent, but we just don’t know. A place where we’re constantly trying to fend off her infections. One where her cough is constantly wet and productive. One where we’re constantly wondering “is this an infection? Is this what will send us to the edge and over?”

It’s a space where you can’t help but get teary when your lady reaches out, grabs your hand, and says, “I love you” spontaneously. A place where we take more pictures. Try to pack more in. A space where you never quite feel like you’re on solid ground.

We’re standing with a foot in both worlds.

And that makes me angry.

The unknown is so piss worthy.

We have our foot in one world that’s a complete mess. I mean in the long run, the Black Lives Matter movement is going to save us all. But not before COVID-19 kills too many of us.

The virus is cramping us, keeping us isolated when we should be adventuring and celebrating. I feel stuck. She is antsy. My dad is wound up tight trying to hold everything together.

And that ticks me off. It shouldn’t be like this.

The other world is one that only she is traveling to. It’s a giant unknown. But it’s a world that most people hold faith in. After all, could anything be worse than our current reality?

But this other world, the one where she goes, it means that she’s gone and we’re left holding all the pieces in our present reality.

And that makes me so damn mad.

Resentful.

Full of crushing sadness.

So.

What happens now?

Since our world came to a full-stop and then immediately kicked into a different gear, I’ve been trying to wrap my head and heart around these weird and complex feelings that come with being in the waiting space. Trying to deal with pure and unadulterated anger.

Just a few weeks ago, we were running a well-oiled machine. One filled with caregivers and laughter and hope and love.

Just a few weeks ago, we were doing our thing. Just a few weeks ago our normal was…normal.

Now, though, with a relative timeline to the end of our family’s journey, to the end of my mom’s battle with Alzheimer’s, our well-oiled machine feels like the wheels are shredding and the engine is being held together with duct tape. Our laughter still happens but it’s colored with sadness. Tears of anger and sadness happen at the drop of a hat.

There is no more relatively unencumbered emotion. There is no emotion that isn’t colored with at least a tinge of anger or regret or sadness.

And I get it. My therapist will say this is normal. It’s normal to be angry in this space. She will say that we have to work through this by acknowledging it, by pinpointing what’s causing it.

She’ll say this because anger is a secondary emotion. There’s a primary emotion that causes anger no matter how quickly we cycle to it, there’s always an emotion that precedes anger.

Always.

So what’s my deal? What’s preceding my anger?

In a word: fear.

It’s fear.

Paralyzing. Anxiety-inducing. There’s a serial killer locked basement in the basement with you.

Fear.

I’m scared of everything that comes with being in the waiting space…of all the “normal” emotions…loss, emptiness, sadness, depression.

I’m scared of all the emotions that people don’t talk about…relief, frustration, resentment…hope.

I’m scared of the guilt that comes with the unspoken emotions.

I’m freaked out about what happens after this is over. Who am I then? What will I do?

I’m terrified of this isolation we’re in. It’s really just the three of us in this emotional tub. I feel like I’m losing touch with my friends. People don’t know what to say much beyond I’m sorry. I don’t want to see people because the second they ask how I am, I lose it.

And that’s okay. But there’s just a heaviness there that wasn’t before and it’s making it hard to connect and stay connected.

But weirdly, or maybe not, my biggest fear is fear of the loss of my anger.

Because if I lose the anger, I feel like this whole precarious tower of barely holding it togetherness crumbles into a steaming pile of crushing sadness. If I lose the anger, my anxiety will come screaming back and I’ll wind up in my closet, burying myself under all the crap there trying to hide from the panic.

I’m afraid of cracking.

The fear is not just in me. It’s a part of me. It’s been part of who I am for six years now. It causes panic attacks and anxiety. And for awhile, turning it into anger seemed to keep some of those fears and anxiety at bay. But now I just feel guilty for being angry. Even if it doesn’t outwardly come out in my interactions with my mom or my dad, I definitely feel it coloring everything.

But it also energizes me to keep moving. To get up in the morning after a sleepless night (and there are always sleepless nights) and do my job, make sure my mom is cared for and loved. And to make sure she knows it.

If I have an enemy to battle (Alzheimer’s and all the shit that comes with it), then I can’t stop. It’s not in my nature to stop. No matter how tired I am. No matter how cloudy my thoughts are from sleep-deprivation.

I need that. I feed off of it.

So.

Maybe.

Just maybe.

The challenge here isn’t to try to make the anger go away or dissipate. Maybe fighting the anger and the Alzheimer’s is too much. Maybe the fighting is the problem.

Maybe there’s a way for anger and I to co-exist in this waiting space without destroying each other.

I really don’t know. But I do know that I can’t keep ripping myself to pieces because I’m pissed off about everything and then pissed off at myself for being pissed off and then guilty about that because it’s coloring everything else I do.

It’s exactly the opposite of the headspace I should be in during the time we have left. And that has to change.

Somehow.

 

Devaluing an Alzheimer’s Life

I’ve been thinking a lot about how others value or put value or devalue the life of a person living with Alzheimer’s. It’s not really something I put a lot of thought into before these last couple weeks.

But after telling my dad, we reached out to everyone else that should know to tell them what was happening.

We did this by email.

Most people responded. Pretty much all expressing sympathy or empathy.

All but one.

And the conversation via text, edited to remove identifiers, went like this:

***

Person: “Thank you for the very heartfelt email and for all you’ve done for [Yvonne]. How are you doing?”

Me: Destroyed. Fine. A mess. Mind going a hundred miles an hour. Probably about like you are, I’d guess? Trying to pull it together [ ].

I don’t know how you manage it, but I think it’s time to [visit].”

Person: “I’m sad but have known this day was coming sooner than later. [She] has not had the quality of life that she would’ve wanted for a long time now. I can still hear her telling me on numerous occasions (well before she got cancer) to not let her live the way she’s living. So, in a sense I’m relieved for [Yvonne]. She’s been a shell of a person for a long time now and I said goodbye to her the last 2 times as if it’d be the last time that I see her. I never expected her to still be here today. I think this is easier for me being further away than for you [Don] when you’re living it day after day.”

***

This person went on to say that they’d disagreed with decisions my dad and I had made, with my mom’s input and agreement, to better her quality of life (cochlear implant, hernia surgery, etc.).

Damn.

A shell of a person for a long time?

Never expected her to to still be here?

Wow.

Not had the quality of life for a long time?

That’s harsh.

I admit at first I was pissed. And then I laughed.

What was this person saying? That we should have somehow figured out a way to euthanize her? That we should have somehow neglected to take care of her? Not fed her? Somehow actively worked to take away her will to live? Worsened her quality of life to shorten her life?

I really don’t know.

So like I said, then I started wondering about the devaluation of a life lived with Alzheimer’s. Because it seemed that in a few words, this person had devalued my mom’s.

Had it been meaningless and without value? Was it sad and pathetic? Or does she have a greater purpose?

If you know me at all, you know my answer.

But this person had me doubting myself.

My definition of quality of life was something I’d never thought about before my mom got sick. Quality of life really wasn’t a choice because, in my mind, we lived until we died and that was kind of that. So you sucked it up. Shuffled along knowing every day was a new day.

When my mom got sick, of course, sucking it up really wasn’t the goal anymore. In the first two years after diagnosis, though, everything was almost normal. So we didn’t really think much about quality of life because while she, like all of us, had her moments, she laughed and loved. Hard.

She knew something was wrong with her, but she got up everyday and did her normal everyday things, just sometimes with a little help.

But then she progressed and the question had to be asked: What is our goal here?

Quality of life was the answer. Our goal was to give her the best quality of life she could possibly have for as long as she showed us that she wanted to be here.

That hasn’t changed.

But what did that mean in practice? And this was what we came up with: Can she still receive and give joy?

If yes, then: is that receiving and giving of joy more often than not? In other words, is she able to get out and do, get out and live, laugh and love?

Or is she mostly miserable with moments of joy?

And until these last few weeks, the answer for my mom had always been yes. Yes, she was getting and giving more than she was out of the game.

She still laughs. Still loves. Still participates. But those moments are decreasing rapidly. We see it everyday now.

But.

We haven’t been going along this six year journey blindly propping her up like the corpse that was Bernie in “Weekend at Bernie’s.” We’ve asked her. She’s weighed in.

Logically, someone who is only with her rarely and then only for a few hours at a time couldn’t really see my mom’s quality of life better than someone who was with her constantly. Could they?

I posit that the answer is no.

But it wasn’t like this giving and receiving joy standard was applied once and only once. It was a constant question. Are we doing right by her? Is this the right thing? And we were asking her. Mom, here’s the situation, what do you think?

I think if you asked one hundred people, who’ve never had any experience with Alzheimer’s, if they’d rather be diagnosed with terminal cancer with only a month to live or Alzheimer’s, you’d probably get a mixed bag. Some would want to go quickly. Some would maybe see Alzheimer’s as a gift of time.

If you asked one hundred family members of people who have Alzheimer’s the same question, one hundred percent of them would say they’d rather have cancer.

Still.

Death is devastating.

I’ll say that again.

Death, any death, is devastating.

Death is loss.

Death is heartbreak.

But Alzheimer’s is a slow march into the depths of nothingness.

It is not quick. It is not forgiving.

I’ve heard Alzheimer’s called “the long goodbye.” This sounds so pleasant. I think it’s better called “the protracted and lengthy, gut-wrenching loss of a loved one.”

So now I’ve said that. That seems confusing. Right? I don’t want Alzheimer’s. My mom didn’t want it. But here we are six years later living with Alzheimer’s.

This person’s comment about my mom not wanting to “live like that” stems from the book “Still Alice” which is a somewhat terrifying fictional account of the thoughts and actions of a woman with Alzheimer’s.

I read it.

It terrified me.

I’m sure they discussed it. Who could read “Still Alice” and come out the other side saying, “Sure. No worries. I wouldn’t mind living like that”?

I know full well that had my mom known what the result of chemotherapy was going to be, she would have chosen not to treat it. Instead, knowing her, she would have planned a vacation, one she always wanted to take. She would have spent time with her greatest love, friends, and family. She would have tackled a pile of books. She would have said everything she needed to say.

But here’s the thing: In this life, we don’t control the hand we are given. And we are not psychics.

She did not know.

We did not know.

We all thought this would be okay. She’d go through the hell of chemo and life would pick up where it left off.
But it didn’t. And instead we were left with an unknown hand.

What were we supposed to do?

Withhold food? Neglect to give her medications? Neglect to get her medical treatment? Not do anything to improve her quality of life? Not strive every day to live our best lives? Not love her or keep her safe?

Not one medical expert has ever advocated for that until now. Until right now in this moment, not one has ever said that it’s time. Even weeks ago, when we were in the emergency department, there was never a question of whether or not to treat, but what was the least invasive way to do so given Covid-19.

The hand we were dealt wasn’t the hand anyone wanted. It wasn’t the hand any logical person would want.

But it was the hand we got. And so we played it. For six years, we played it.

And let’s be clear, we were never going to beat the house. The game was always rigged against us. It was designed so we would lose.
But I think, like everything in life, you have a choice. Not the choice to choose your hand. But the choice in how you play it.

The choice we made, collectively, was to play our hand filled with love and hope. We played our hand, stealing laughter and adventure from the Alzheimer’s dealer.

We played our hand always assessing whether our next turn would improve or negatively impact quality of life.

We played our hand following my mom’s lead.
People have a will to live or they don’t. People are either attached to this world or they aren’t.

In my mom’s case, she’s filled with it. Even now. The other day I flat out told her that her lungs were shot. That they weren’t working the way they were supposed to anymore. I told her it was going to get harder and harder to fight off infections.

Her response?

“Well that really sucks.”

Further, right before she started chemotherapy in June 2014, she apparently bought my dad a Father’s Day card. We found it just the other day in her jewelry drawer.

Mom mom loved quotes and sayings. Adored them. Cut them out, taped them to the bathroom wall, the shower door, your bedroom door, put them on the refrigerator, and filled up a notebook with them.

So in an envelope inside this card was a little cut out saying.

Here’s what it said:
“There is no moment of my life when you are not a part of me; you hold my heart; you guard my soul; you guide my dreams so tenderly.
“And if my will might be done, and all I long for could come true, with perfect joy, I would choose to share eternity with you.”

I mean, damn. Right? Here’s a woman about to start chemotherapy telling her husband of fifty-seven years that she wants to live, for them. For them, she wants to live.

And I don’t think that’s changed. Until now, here at the end, I don’t think that ever changed.

If she’d have stopped eating or stopped getting out of bed. If she’d have stopped showing an interest in life and not just stopped showing an interest in things her brain could no longer do. If she’d have let go at any point, as hard as it would have been, we would have, too.

But she didn’t.

The smile she still has for my dad? It lights up the room. She still wants his kisses and hugs; and sometimes, she won’t let go of him.

This isn’t the life she wanted. It’s not the life anyone wanted for her. But it’s the life she got, it’s the hand we were dealt. It was the hand we played.

So because we collectively played the hand she didn’t want, does that mean her life had no value or meaning or that she was really just the shell of a person?

Here’s my answer.

Lives lived with Alzheimer’s have incredible meaning. They give. They participate. They teach. They love. They live life more fully than a lot of people ever will.

I would argue that my mom’s life has had, and will always have, more value than mine. The things she accomplished before Alzheimer’s were incredible. But the things she has accomplished after diagnosis are equally so.

I would also argue that she has given more to the people she’s spent time with in the last six years than some people will ever give. She’s always led by example, but never more than the last six years. I would argue that this is true for most people living with Alzheimer’s.

I’m not rationalizing. I’m extrapolating.

You can’t throw people away when the life they lived isn’t the life they have anymore. If that was the case, what would happen to human souls with special needs? To older folks with increased care needs? To people who get into life-altering accidents?

So does this alteration in life’s path mean that our friends and loved ones living with Alzheimer’s are shells of people? Is my mom a shell of a person?

My short answer is: No.

No. They are not.

My longer answer is: No.

But…

But at the end of the disease, when the brain has been completely ravaged, when people with Alzheimer’s are actively dying, when they can’t eat, walk, or move, then probably yes.

But. Is my mom the shell of a person? Right here? Right now?

No. No, she is not.

Is she the same person as a year ago?

No.

Is she the same person as before she was diagnosed?

Oh, hell no.

But a shell? Legit LOL. No. No, she is not.

On one recent Tuesday in the car, she was singing along to our playlist. Singing “Clementine,” “The Wheels on the Bus,” and “Yellow Submarine.”

She held my hand. It wasn’t me reaching out and grabbing hers. She reached out and grabbed mine. And when I’d need to put my hand on the wheel, she’d reach out and hold my arm until she could have my hand again.

Part of our conversation went like this:

Me: You’re my best friend.

Her: *smiles*

Me: Will you be my best friend?

Her: *gives me the “mom look” like how did I raise such a weird kid?*

*puts her finger to her chin in a dramatically thoughtful fashion*

Her: I’ll think about it.

Me: Ouch! *and then I laughed*

She smiled that wry little smile of hers and I laughed harder.

It’s just one example of thousands over the last six years.

She’s not a shell.

Not even now here in the home stretch.

We actively engage in life every single day. We laugh, love, sing, dance, and paint. We go to the beach, give hugs, lots of them, sit quietly, and hold hands. We adventure. Only now, now, we do a lot less of it.

On all our adventures, she was an active participant. I didn’t carry the shell of a person to the shower, dress her, carry her to the car, plop her in a wheelchair just so I could go to the art museum.

We went to the art museum because I asked if she wanted to see the Georgia O’Keeffe’s. And she said yes.. We went to the beach because I asked if she wanted to. And if on any particular day, she wanted to go, but wanted to stay in the car, we did. If she didn’t want to go, we didn’t.

But we lived.

Shell people don’t laugh. They don’t love. They don’t paint. They don’t sing. They don’t dance. Shell people don’t engage.

She’s not the shell of a person. But her body is dying. And she’s getting ready to leave. That doesn’t mean she’s not still here actively engaging with us.

So what I know is this. We gave her the best we had. She let us know that she had a great life…how do I know this? Because she’d say it. “I have a great life,” or “what a life I have,” or “I’m so blessed.”

Having been with her constantly for the last six years, despite the Doubting Thomas, I am one hundred percent sure that she’s sliding into home base filled with love after living an amazing life, including the last six years.

Post-script July 3, 2020. Last night, after a really good cognitive day, I flat out asked my mom: “Do you like your life?”
Her response?
“Oh yes! I love it.”
All doubts resolved.