Caregiver’s Note to Self: You’re Enough

I began documenting this uncertain journey four years ago next month. My words are often reminders, a big fat note to self, because I mostly write for myself. I also write to honor my parents, to lift them on the journey. My hope is to connect with other caregivers and empathetic readers through my words. To lift them.

Note to self: This is damn difficult.

A few days ago, a friend who was also an Alzheimer’s caregiver for her mom, wrote to me:

Been reading your blogs —tough times. Brings back memories, it can be so damn difficult & exhausting. Your mom is so lucky to have you, makes me wish I would have done more for my mom. Can’t dwell on that.

The makes me wish… sentence made me sad. I never want my journey notes to inspire regrets. It’s the opposite of why I write about anything. Down the road, I may have a similar struggle with regrets, so this is me writing to my friend and a note to myself: We do our best.

Another friend who is a facilitator for the Caregivers of Alzheimer’s and Dementia Patients Support Group offered this to one of the group members who was struggling with the I-wish-I-could’ve/would’ve thought pattern:

You did the best you could with the tools you had at the moment.

Note to self: Do your best with what you have.

My friend’s words have stayed with me as I move through this journey with my parents. I offer them back to my dad when he struggles with mom, to myself when I’m not happy with my choices. I offer them here, now, to any other caregiver, past or present.

This journey plays out differently for every family because the range in behavior and condition of Alzheimer’s patients is dramatic. I have two friends whose moms became violent. Of course their families needed memory care. One of my grandmothers ran all of the sitters off and nearly burned her house down more than once. Of course my uncle thought she’d be safer in a nursing home. My other grandmother, the one with a switch bush just outside her back door for spanking her grandchildren, became docile, a lost puppy following and calling after the only shred of her life that hadn’t faded: Norman, my grandfather.

My grandfather patiently cared for her until “she passed out.” He kept her home because he could. Patience may have been his nature, but I imagine he never thought of it as a choice. He was just doing the best he could.

Note to self: I see you.

My dad once told me that he told mom, “I’m no Norman.” I’m not sure the exact context, but it involved Alzheimer’s. Mom’s been watching this bull snort at her for at least six years. Dad knew my grandfather’s model wouldn’t work for him.

You don’t have to be a Norman, Dad!

Dad isn’t Norman and he’s doing his best. I know because I see him.

And my friend who wrote to me last week? I know she did her best. She kept a sense of humor I envy, and she did some beautiful things for her mom and dad that I wish I could do.

I see you! 

The things I do for my mom won’t work for other caregivers. The choices other caregivers make won’t work for my family. Our journeys are different and caregivers can’t all respond in the same way. We don’t need to be the same. What we need is to be seen. This is a damn difficult journey.

Note to self: Pity parties and guilting don’t work.

I mostly write about the best moments, that moment we managed to crawl out of a hole that swallowed us or that moment we found a joyful activity. The simple moments that offer a little hope and light.

I don’t always walk in the light.

Restless my mom kept asking where dad was. I had sent him to Sunday evening church without her so I could spend a little time with mom before I left for two weeks.

“He was supposed to take me!”

“I asked dad to let you stay with me because I’m leaving tonight. You said you wanted to stay with me. Don’t you?”

She was agitated. “If people would just do what they say!”

I’m not sure if I was truly sad or if I thought I could guilt her into relaxing. “I’m sad. I thought you’d want to spend the evening with me.”

When I didn’t get far the first time, I used the same tactic a second. Maybe a third. Devolving the conversation.

“I guess I’m the bad one now,” she said, staring hard into the other room, away from me.

Note to self: The ALZ bubble is always on the verge of bursting.

The words that follow might sound like in-my-defense statements (and it’s not untrue), but I write them as notes to self for caregivers.

Outside of the ALZ bubble it can be easy to ideate the perfect things you’ll do and the exemplary demeanor you’ll exhibit (or would have done and would have exhibited) through the difficult moments.

I have the luxury of removing myself two weeks at a time when I go home. Dad doesn’t. Many caregivers don’t. They’re in the ALZ bubble 24-7.

The ALZ bubble is pressurized, about to pop with hard moments. Sure you have tools —an excellent box of tools— but under pressure you struggle to locate them. Not to mention that you’re stuck in that pressurized bubble with your own baggage and, let’s face it, your own garbage.

It makes me sad that you don’t want to be with me.

What a load of garbage! What was I thinking? I clearly wasn’t.

Note to self: There is no pause button.

Life doesn’t pause for the miracle of patience. You have to find patience in spite of the life tasks that pull and weigh on you, and some days the patience is not there.

I needed to pack, take out the garbage, the compost, close the blinds, pack the computer, prepare the house for a 2-week absence. Patience wasn’t in my tool box.

Your scramble for tools is exacerbated by the prickly gasses of emotions that fill the ALZ bubble: sadness, disappointment, fear, impatience, anger —oh the anger!—, frustration, and grief. Pressurized, tangled, hot, urgent. It’s a miracle you can breathe in there, let alone rise to a task.

Dad recently reported a new development. He didn’t say so, but I’m sure the new development injected the gas of embarrassment into his ALZ bubble. Sitting in their pew at church, he saw something on mom’s neck.

“Oh my, is that toothpaste on your neck? Here, let me wipe it off. Why did you put… ? Never mind.”

We can’t side-step or mitigate all the developments. We can’t shake off the emotional toll and we have precious little recovery time because it’s all we can do to manage this wagon, barreling down the mountain with no brakes. There is no pause button, so we strategize, make promises to ourselves, face the next day.

To help mom with where to put what, we’ll simplify and organize toiletries, outfits in the closet, and underwear in the drawers. That’s the best we can do.

Note to self: Make the best of the journey, it ends in disaster.

This journey is hard. You care for someone you love knowing all the while you’ll both lose. Embrace the grace you’re given in any moment.

If you said something that made her smile, congratulate yourself. If you were able to sit still with him in the afternoon even though the house needed tending, give yourself credit. By the same token, give yourself a break for those moments when you left his side impatiently and for that thing you said that made her agitation escalate.

The balance is hard, the journey unkind.

For me, the journey is all I have left with mom. She’s going to lose this battle. I’m losing her bit by bit. Dad’s losing his love. I know where we’re headed and I don’t like it. The best I can do is make the best I can of the journey.

Note to self: This is so damn difficult. I’ll do the best I can today. And that’s enough.

If you’re on an Alzheimer’s journey, remember to take care of yourself along the way, give yourself a break, accept the help of others. If you’re not but you know someone who is, see them and let them know you see them.

©Pennie Nichols. All Rights Reserved. 2021.

I don’t care: A caregiver’s love

I don’t care.

The dishes. You have to watch her. She forgets to use soap. Or sometimes, she doesn’t rinse it off.

I don’t care.

Are you sure about that? She’ll probably pull up the flowers too.

I don’t care.

I’d be careful about that. What if she paints the wrong thing?

You know what? She did. And I.don’t.care.

She did it wrong. We looked up, and the floor and railing close to the column were yellow. She had painted beyond the column.

I don’t care.

I checked on her in the flower bed where she was busily pulling weeds, and sure enough, some flowers had come up with the weeds.

I don’t care.

And my dishes. So what!?

If I can create for her even the tiniest opening into a world of doing, contributing, helping, if going there brings her a moment of joy —a fraction of a moment!—, I don’t care if she can’t do the thing perfectly. I don’t care if she gets it all wrong.

The tiny inconveniences of re-rinsing dishes, rescuing flowers, removing errant paint? I don’t care. These are the biggest ways to love her now.

©Pennie Nichols. All Rights Reserved. 2021.

For more stories about mom’s journey with Alzheimer’s explore my website.

This is my house!

This is my house! but she’s walking away.

I popped in for a short visit last Saturday.

“How you doin’?” I asked mom.

Without looking at me, she answered, “It’s bad.”

“Your… ?” I pointed at my head. She looked at me and nodded.

It’s getting bad.

A few weeks ago, I received reports of drama in the house.

“This is my house!” mom told the sitter, and the sitter’s tender efforts to help mom manage the house were thwarted.

Was she sweeping the kitchen? Maybe starting lunch? Clearing the dining room?

This is my house!

The dining room furniture is a set that mom and dad bought the year we lived in San José, before we went to Spain for three. The great big before, when mom could buy furniture in stores in California that she wouldn’t use until she moved to Spain, into a house she had yet to see.

The dining room set has been with mom and dad for fifty three years and counting. The set is modest, but solid. Real wood. Well-traveled, from California to Spain, then to Alabama, from Alabama to Tennessee, then into storage in Mississippi, and finally to Louisiana, where it took its place in the center of the home mom helped dad build.

They don’t make them like this anymore.

After the chairs came out of storage, mom reupholstered the cushions, repaired the wicker backs. She painted the dining room where they currently stand at attention around the table, ready for the next family gathering. Mom painted all the rooms of the house, not just this house, many rooms of many houses. Mom is the best at painting, the one we count on to spackle, paint perfect lines around trim, even coats… She is the expert…

Mom is… She was the best painter.

I struggle with verb tense. She isn’t as she was.

This is my house, she reminds the sitter. She reminds us.

It still is, mom.

I struggle with seeing her skills in past tense. She not only painted her houses, she helped dad with many stages of the build. She wove wires and PVC through frames for light and water. How many of us can say that about the houses we claim?

And she was extra. When they poured walkways, she collected leftover concrete in plastic planters from the nursery to make hundreds of stepping stones that we still use, that our friends use in their yards. People I don’t know walk on her stepping stones at my church.

It’s hard to let go of the person she has been.

Exasperation

I visited from college one year when mom and dad were building their home in Tennessee.

“I’m not learning anything new!” she told me. “The more you know how to do, the more you have to do.”

I was an eager college student, and her words confused me, their wisdom twisted around the exasperation of a 40-something weary woman.

In her early 30s, mom was in college, attending school as she raised children. She interrupted my homework one afternoon to tell me, “I wish we didn’t need sleep! I could get so much more done if I didn’t have to sleep.” Exasperation.

She’s exasperated now.

This is my house!

She won’t say it but I can hear the exclamatory dammit at the end.

Mom is not and never was a quitter. She kept learning new things beyond her 40s. After she was done with building her own home for the third time, she read Mother Earth News for gardening hacks, Southern Living for Christmas cookie recipes, Reader’s Digest for something new and different. Stacks of magazines on all the end tables, night stands, and in the kitchen and bathrooms.

I wish I had paid more attention. Most of what she learned, knew, did, and was, is no longer.

I needed her last year when I tried to make buckeyes for my brother and son. She was right there with me, but she wasn’t. I made a tub of buckeye badness that no one could eat.

Walking away

This week dad called to let me know she walked out. He came out of the bathroom to go to bed, and she was gone.

When he didn’t find her in the kitchen or living room, he looked for her outside. He looked in the back. Not there, and thank god! not in the pool. Then to the front where, through the darkness, he spotted her walking down the long driveway towards the highway.

She’s been walking away from us for a long time. It’s hard. It’s scary. Some days it’s exasperating.

This is our present tense, where she is now: she is walking away.

Even knowing she isn’t what she was, we cling to the pieces. We’re trying to hold the pieces together, sitters to keep her safe and keep her company, housemaid to help her keep a tidy house.

This is my house!

It’s hard.

I can’t imagine the memories and questions that swirl in dad’s head as he meets mom where she is day after day, less and less of her there. I struggle with deep questions, but most of the tangle in my head is about the small things, moments I didn’t hold well, skills I didn’t master.

How do I make your buckeyes? When will I have time to revive your garden?

I miss mom. I want her back.

I don’t want to learn anything new!

What can we do? She’s tired.

Sit with me

“It’s bad,” she was looking at the floor as she told me. I wondered what images were going through her mind, but I knew what she meant.

For that fragile moment, she stood on top of the disease, talking about it, not from beneath it. I knew if I dug in with questions, she’d slip back under.

The exasperation was mutual.

She’s walking away from all that was hers, her home, her husband, her children, and grandchildren. Yet in these moments, she clings to what’s left.

I wish I could do something to fix this for her. I reached for her hand, “I’m so sorry,” and we sat for a spell.

They don’t make them like this anymore.

©Pennie Nichols. All Rights Reserved. 2021

#WEP Challenge: The Great Wave Metaphor

#WEP is a bimonthly writing challenge. #WEP is a writing community and partners with #IWSG (Insecure Writers Support Group). This year is the Year of the Art; all six prompts are works of art. Visit the links to find out more about #IWSG and #WEP, and to read other submissions. Be supportive! Leave comments on the writers’ blog posts. And here please!

This is my first #WEP submission. The prompt for this challenge is The Great Wave, a woodblock print by Japanese artist Hokusai. You can find out more about the print in the link on the screenshot.

WEP Great Wave

We all face an impossible wave at some point. Ours is Alzheimer’s. I’ve used several metaphors to describe my mom’s Alzheimer’s journey, the word “journey” being one of them, bull, bumper cars, and others. Today, I’m standing in this metaphor: the Great Wave.

The Great Wave Metaphor

I take a couple of steps in.

The waves are barely…

…a lap of foam against my toes.

Then another wave. Charging line of water, sand, and fragments cover my feet.

I stand in my own metaphor.

Is this how it begins?

Imperceptible force. A lap of water?

The wave collapses, drawing tiny shells, bits of sand back into the ocean’s mystery.

I take another step.

Do I have a choice?

“I don’t like it!” The words rise like a wave, above the gravel in mom’s throat.

“What?” dad asks, but he knows the answer.

“Being alone!”

Her voice can be strong, her words solid, especially when she’s angry.

“But you’re not alone. The sitters are with you.”

“I don’t like it!” she repeats, strong, riding this wave of frustration. “Who likes that? Someone always…”

The wave begins to collapse, her words fail her. She waves both hands frantically behind her as she takes a step forward.

“…following you?” I ask.

“Yeah, who likes that?”

“It’s to keep you safe. What if you fall?”

“I don’t like it!”

None of us do.

Do we have a choice?

Sometimes she falls… the waves.

Mom’s still waving a hand behind her, shooing away the sitter who’s already left for the day, who followed her all the day.

“Who likes someone…” her hands brandishing in the air, “even to the bathroom. I guess I took too long and…”

“She came to check on you?” I ask, actively guiding mom away from the collapsing conversation.

“I just want to be with my people.”

“I guess I just need to quit…” dad begins, the riptide pulling him under.

The wave often has its way with us, sucking us in, under.

This is hard.

I take mom by the elbow. She resists a bit. I’m interrupting.

“You’re trying to stop me…”

Yes, I don’t want her to spin dad into an argument he’ll regret, and she’ll forget. Her words will rise, hurtful, then collapse on themselves, rolling back out, forgotten.

“C’mon. Let’s go to my house.”

I take her hand and guide her into our afternoon routine: a walk to my house, the dirty dishes, small chores she can still do, she likes to do.

Mom likes to help, be needed but she struggles against the waves and currents. They batter her small frame. The riptide buckles her knees.

“My legs don’t know what they want to do.”

I’m holding her hand as we walk to my house, tightening my grip against the pull of her legs. Another wave of symptoms? Her legs do their own thing, hurling her forward, sideways, sometimes backwards.

“I’ve got you.”

But do I?

I just want to be with my people, but her people are busy and scattered.

Sometimes I submerge myself before it hits, let the wave wash above me, gently pulling my limbs, swirling my hair.

My children like to dive headfirst into the waves. Total control.

None of us know how to ride it.

This is so hard.

I stand in this metaphor, lurching back as the wave hits me, inching forward with the riptide, waiting for answers.

Mom dove into the disease headfirst.

“I think it started,” she told me one day about four years ago. “I’m having trouble remembering things.”

Bull by the horns, dive into the wave.

We know about waves in our family. We watched helpless as a great wave pulled my dad’s mom under. My shy, small grandmother sunk fast, fighting sitters, swearing, violent then diminished. Then it came after my mom’s mom. My stern, strong grandmother drifted into the waters, lost, uncharacteristically meek and needy. The wave batters the mind, not just the memories, but also the quirks, the personality, broken pieces of shell, unrecognizable, battered into sand.

Mom knew her wave might come.

Standing in the surf, in a family history of waves, a broken shell lodges between my toes.

This hurts.

The insistent thrashing of shells that crack, splinter, and shatter, tiny rivers of foam and sand chasing the waves back to sea.

“I don’t like this!”

It’s hard to move freely in the surges and swells, water battering our control, wearing us down.

“Sometimes we don’t use good words,” mom says as we walk through the field to my house, the sitter long gone, most of the day behind us.

“You had a hard day?” I ask, knowing that she probably hurled ugly words at the sitter earlier.

“I don’t like…” another flourish as she waves her free hand.

I hold her back as her legs pull her forward. We stop a moment to get control. She looks up.

“You have clothes on the line.”

Her voice changes. Laundry on a line, something she can do.

“I do!”

“What else?”

She wants to help, something to do besides battling the waves and swatting away sitters. Something she can do without spying eyes.

“Dishes.”

“Lots?”

“No, but I’ll cook something, and you’ll have more.”

The great wave is coming.

We can all feel it. It’s fast and it’s slow. Some days we all collapse on the foamy sand, exhausted. Other days, we wade into the waters with her.

She’s a little less fierce, but she dives into the wave. “I have this thing, this problem with my head,” she explains.

The great wave will swallow her, cartwheels, legs over head, words foaming, splintering, sinking into the sand.

“The FDA approved a new drug this week.”

But it’s too late for Aduhelm. We can’t stop the great wave. It’s coming. It will take her. And bits of us.

Busy and scattered, we do our best to stand with her in the surf, staring across the surface of the mystery.

It’s coming. She knows it’s coming. She’s known a long time and she dives in headfirst every day to remember.

©Pennie Nichols. All Rights Reserved 2021
Word count: 970
FCA and all comments and feedback welcome

My patio moment

The patio moment didn’t last long. I’m grateful. Those sixty to two hundred seconds were petrifying.

Petrification

Part of me wants to tuck this darkness down, hide it from worried eyes, prying minds. When I told Steven about it last night, I finished with, “Don’t tell anyone.”

This moment right here, the telling someone, must be a cousin to the moment an addict experiences, speaking that dark truth, exposing the disease. The telling is also petrifying.

Scientists blame calcification.

Emotionally, it’s hard, a petrification.

Patios

I have many soft emotions around patios, my patio, where I’ve created a sacred space for writing morning pages, meditating, reading; my friend’s patio, where we’ve made space for our laughter, joy, dreams, tears, and anger.

My friend’s patio is also her sacred space. Although my patio isn’t as nice or big as hers, she often commented when we would sit on my patio about how much she wished her patio were covered like mine. This year, she installed a roof over her patio so she can enjoy it rain or shine.  I was standing in her yard, admiring it, remembering how she used to express her longing for this roof whenever we sat under my patio cover.

My patio.

My patio?

I closed my eyes, turned away from my friend and Steven, who were untangling solar lights.

My patio! What does my patio look like?

I know it has a roof, a covering.

My patio.

I could not conjure the image of my patio.

I walked away, eyes squeezed tight now, connect the dots connect the dots.

My house.

I couldn’t find it. Not yet.

I just need one small dot and then one more.

I’m not sure I was breathing.

My first dot was the dead DeLorean parked in our driveway.

Dot, dot, dot…

Walking through the front door, the TV room, the dining room.

My patio!

Is this the beginning?

Maybe this was just an empathetic moment, I’m so close to mom’s battle.

But what if it’s the first of many moments, when the dots are harder and harder to connect?

I sat under my friend’s patio, doubling over in the chair.

I looked up the stages of Alzheimer’s. This would be a pre-stage 1. Stage .25?

One of the beautiful gifts mom has given us on her journey is her openness. She didn’t tuck her darkness down, hiding it. As I’ve watched her battle this bull, that openness is one of her weapons against it.

I see you!

Every time she can respond to the bull’s attacks with that recognition, that I see you, she smites it. Just a bit.

Did I get a first glimpse of that bull yesterday, when I couldn’t see my own patio?

I pray it’s an anomaly, a mind crowded with too many to-dos, a little stress, and relational tension.

But what if it’s the first spec of calcification on my hippocampus?

Even as I told Steven don’t tell anyone, I thought of mom. I have this problem. Her sometimes uncomfortable frankness about the disease that has slowly sucked the life out of her.

Since when? When did it start for her?

Fight in the Light

We’ll never know. Maybe she was also in her 60s when it started. The disease showed up for my grandmothers when they were in their 60s.

I hope this is my one and only patio moment, but what if it’s not? Taking the secrets of a disease to the grave serves no one, not even the victim.

There is a shared despair around Alzheimer’s. My dad feels the despair as he watches the beast take mom, one bite at a time. I feel my own despair when I visit them. Over the last four years, I’ve touched the edges of the despair mom must feel, but in that patio moment, I felt it. Her despair as she scrambles for the dots to get back home, as I squeezed my eyes to find my patio.

It’s petrifying to imagine what could be happening under my skull, but calcification doesn’t pause in the darkness. This might simply be a brain fart, the passing of a mental stone, but if this is the beginning of a battle, I’ll stand in the sun and fight it in the light.

May 29, 2021, 5:30 pm. I could not remember my patio.

©Pennie Nichols. All Rights Reserved. 2021

We’re not okay. But we’ll be fine. We tuck and roll.

Tuck and roll? I learned it in a gym, as part of exhausting drills and practices.

I’m exhausted again. But it’s different. Different from a long run or an intense workout because I don’t recover all the things. No standing in the mirror to check the shape of my tummy, the tone of my thighs. No bonus endorphin boost.

I’m just tired.

I ask dad to send mom to my house in the gator. She no longer drives cars but still has the skills, so…

Send mom down in the gator. 

A few weeks ago, mom and I started my dam sunflower project: a tunnel of mammoth sunflowers flanked by shorter ones along the top of the pond dam. Today, a sunny, cool morning, we’ll plant the second round of seedlings.

Mom loves to do things with me. I say “with me” but honestly, she loves to have something to do with anyone, to feel like she’s contributing, helping.

I hear the gator, expecting to greet a happy mom, but she climbs out sulky, weary.

What’s wrong, Mom?

I’m just tired.

Oh, you didn’t sleep well?

No, I’m just tired of this, she waves her hands in the air to fill in words that escape her. I’m tired of being alone.

Thud. Reflex hand to chest.

Mom’s not alone, of course, and now that we have sitters, she spends very little time alone.

I’m tired of being alone.

I give her a long hug.

I’m here now.

I push down the heaviness as I load the gator.

You ready to plant some flowers?

She manages a detached smile.

After we load ourselves, I tell her, Hang on!! and gun the gator up the hill.

There it is! The joy in her eyes.

I wonder if revving the gator brings back memories of her gold T-bird with rear doors that open backwards. She loved to taunt dad, gunning the engine as she left tread on her way to…

She holds her hat to her head. Where are we going?

Thelma? Louise?

To the pond. To plant some more sunflowers.

Help.

Dewberries are in season and briar patches cover the pond dam. I give mom a bucket to pick berries while I dig forty holes for seedlings.

A year ago, mom and I could tag team a project like this, digging, adding nutrients, seedlings, soil, water. Now, I talk her through the steps she.taught.me, but she loses her way, tangled in the briar patch of her hippocampus. She can pick berries without reminders, so, Here’s your bucket.

About twenty holes in, I hear “Help.” No exclamation in her voice. Just “Help.”

I don’t see her at first. She rolled down the bank through briars and berries, just short of the pond.

I reach out, but she refuses my hands.

I lost all my…

She waves one hand looking for the word. Berries.

I find her bucket a couple of feet away in the briars and collect her berries. She watches, leaning up the bank, chest and arms resting between bent knees.

When she’s satisfied, she lets me take her hands. She’s slight, but I struggle to pull her up. Visions of both of us tumbling into the pond splash through my mind. I hold tight until we’re safely on the flat top of the ridge.

There, I say turning to pick up the berry bucket.

But she keeps walking backwards, as if still pulled by an incline.

I can’t stop.

Her voice is soft, her arms flail.

I grab one of her hands and put an arm around her waist. Her legs keep stepping back. I walk (push?) her to the gator.

Sit for a spell, Mom. Drink some water.

This isn’t the first time she complained she couldn’t control her legs. Is it part of this disease? This isn’t the first time she rolled down the ridge.

When mom helped me with the first round of sunflower seedlings, she rolled down the west side of the dam, away from the pond. She managed to stand up, but she rolled back down.

Wait! I ran to her, gave her my hand, pulled her up. When I let go, down she went! Again!

I grabbed her hand. This time I didn’t let go until she was standing on the flat middle of the ridge. She laughed.

Well, that’s a story!

Mom trained to fall well most of her life. She still falls well.

Last year she helped dad unload some things from the bed of the truck. Done, she went to climb out, the gate popped open, and mom went flying through the air and onto the concrete driveway.

Tuck and roll. Tuck.and.roll!

Mom trained for this. As a coach, she trained me and hundreds of other teenagers how to fall.

When you play the game, a fall is inevitable.

Tuck and roll!

Dad turned in time to see mom sitting, chest straddled through her knees, on the driveway, a few scrapes, but not a single broken bone.

Today, I pull her through her straddle, up the ridge, out of the berries, but she doesn’t laugh. She sits in the gator, sips her water, rests.

We’re tired.

I want the exhaustion endorphins, dammit. I want mom to receive some too, to take the deep satisfying breath, feel the renewal of her effort course through her blood.

But the endorphins aren’t coming, are they?

Maybe this feeling is premature grief? Or its evil sibling, dread, stealing the one gift this disease offers: live.in.the.present.

Perhaps this is grief’s companion? Helplessness? Like rolling through briars down a ridge?

Tuck and roll, tuck and roll, we’ll save our bones, but none of our tuck and roll training will save us from the fall. We’re falling.

Maybe the feeling is all these and a lot more things.

I’m not sure how much longer we can tuck and roll, how many more bones we can save, what we can hold onto.

We’re tired, lonely exhausted, helpless falling, grieving the berries we dropped, even as we plant flowers together, hold each other on the ridge, and zoom up the hill in a noisy gator with a smile. We’re terrified.

Tuck and roll.

What’s tuck and roll? It’s the grace you add to your fall.

I refuse to let walking backwards be mom’s final effort today. I take her out of the gator. We make one last round to admire the seedlings, place dried grasses around their bases, load our tools, then head home.

We’re not okay. This fall is inevitable, and we won’t recover completely.

But we’ll be fine. On the other side of this, after we tuck and roll, we’ll have berry stains and briars in our bottoms.

But we’ll be fine.

©Pennie Nichols. All Rights Reserved. 2021

Eloise

She isn’t safe.

Mom sees her first, noticing her through the bay window, walking on the highway with her dogs. “That’s not safe.”

Cars and trucks barrel over the hill and around our bend of highway. Most slow as they pass her, some stop as her dogs cross.

She’s sporting reddish floral leggings, a yellow sweater, another sweater around her waist, a turquoise necklace, a red purse, and tennis shoes. The metal quad cane extends from her right arm, its four feet steadying her as she leans hard into the handle with each step.

“Would you like some help?”

“Oh, I’m okay.”

Cars approach us from both directions as one of the smaller dogs runs towards us, mid-lane. I step into her path and reach down to pick her up as she approaches. Two larger dogs rest in the ditch, watching us with interest.

“I can help.”

“Thanks.” She lifts her right arm and points with the cane, “I’m going right there.” That’s when I notice the small dog in her left arm, slowly slipping out.

“I can carry that one too if you like.”

“Thanks.” She allows me to take the brown and white puppy. She nods at the brown and white dog in my left arm, “That’s the momma.”

The walk to her driveway is less than 300 feet, but our pace to safety is slow. The momma dog is relaxed, but the puppy wiggles and whines for his owner.

During a pause, she lifts her right arm again, this time to point at the dogs in the ditch. “Those two,” then lifting to point farther up, “Remember when those trailers were there?”

Some of the trailers still are.

“Those two were born in those trailers. Their momma died. They’re all’s that’s left of her dogs.”

The two ditch dogs stay put during our stroll to her driveway. Maybe they understand the danger of the highway.

Her story

My strolling companion becomes immediately familiar, talking in fragments and slivers of personal information.

“I normally don’t come this way,” she explains. In snippets I can’t always follow, she describes how she ended up here today. She’s clearly exhausted. Based on what I know about the area and her description, she’s been walking at least two miles.

“My lights are out, you know.” She’s talking at a steady clip now, looking up at me between phrases. Her words flow like water over a ridge, cascading and splashing, mixing, tumbling. “My husband, after he passed…”

She explains that they lived in Baton Rouge. I start to tell her I’m from there, but it’s not easy to interject.

“That was my big mistake, coming here.”

I hear a big truck approaching, so I pause and shield her while he passes, slowing only slightly.

“I should have stayed in Baton Rouge, but they made me sell my trailer.”

As we approach her driveway, she seems hesitant to continue with me.

“This is far enough.”

“That’s okay. I’ll walk you to the driveway.”

Catching her breath she continues the cascade of life history. “You know…” she points her cane and names one of the neighbors up the road, “He took my car. They told me I can’t drive no more. But I have a driver’s license. I can drive. But they took my car.”

I know some of her kin probably don’t always do right by her, but taking away her car is not something I fault them for. Sure, maybe she can drive, but that doesn’t mean she should.

“This is far enough,” she repeats as we reach the drive.

“I’ll walk you to the gate.” I want to get her all the way off the highway.

“You see my son’s signs?” she asks.

I smile and nod.

DO NOT ENTER / KEEP OUT

Large, threatening hand-sprayed signs. I wouldn’t dream of going beyond them.

“I’ll just walk you to the gate.”

She changes directions, back towards the highway. “Let me check to see if they delivered my mail!”

She hobbles to the box, talking with each step, bends into the box. Empty.

When we come closer to the gate, I hand her the puppy, set the momma dog down, and watch them walk towards the DO NOT ENTER sign leaning just inside the gate. She turns to me, “Thank you.”

As she turns back to the gate, I tell her, “My name is Pennie.”

She smiles, “I’m Eloise.”

I watch Eloise skirt the giant puddle in front of the gate and walk into the property. As I walk home, I see mom on the my front porch, wringing her hands.

We all deserve a safe place.

I know a little about the families across the street, but mostly second-hand and so it’s not mine to tell stories about them.

  • What I know first-hand after today is the tenderness of Eloise. The puppy begged to get back to her the whole time I held him. The momma dog and two bigger dogs followed her devotedly.
  • What I know first-hand after my walk with her is the resilience of Eloise. She walked at least two miles on the rural roads and a highway and she probably lives without electricity.
  • What I know first-hand after talking to Eloise is her mind is slipping.

Mom isn’t walking down the highway with a red purse and four dogs, but she’s falling apart too. I think her heart leapt from the sofa when she saw Eloise shuffling along the highway with a cane and four dogs because she knows what it is to be lost.

Eloise looks healthy enough, her puppies are well-fed, and she’s not driving, so someone’s doing something right for her. My prayer for Eloise is that she is and feels safe at home.

I share with mom some of the things that Eloise told me. When I explain that I offered to walk her to the gate, mom says, “You can’t go in there!”

“I know mom,” and we walk into the safety of my home.

©Pennie Nichols. All Rights Reserved. 2021

Losing is hard

I  want to be a hero, but today isn’t the day. Today is the day I bend into the sob and ask myself, “What is this?”

It’s a rhetorical question. I know what “this” is. But I double over anyway.

Losing is hard.

I spend two weeks at the suburban (capital city) home with my honey, then two at the water hollow (farm) home close to my parents. The first two days at the water hollow are the hardest.

She’s still swimming to the surface, bubbling “I can’t remember the words” because she’s a fighter. Even as we’re giving up, she hasn’t. She can’t hide what she’s lost. My throat catches as I fill in the blanks for her with the words that disappeared since… two weeks ago.

This sucks.

Sometimes I power through the two weeks without a wail. Not this time.

I would bargain, but with whom? For what? There are no more drugs. No heroes in the corner waiting to come forward with a measure of relief, certainly not a cure. Certainly not at her age.

At the end of a sitter’s day, I fetch mom. We walk from their house down to mine. I hold her hand because this incredible athlete’s steps are unsteady. Sometimes I hold her back as her gate careens her forward or off to one side.

I can’t… She flails her free hand for the word… they just go. I fill in the they blank —”legs”—, hold her hand tight, focusing on the sweetness of holding hands instead of the bitterness of an athlete’s loss.

Stop!

Mom’s a fierce athlete. She didn’t always win but she never lost without a fight. I wish her grandchildren knew the tales of her prowess. I can’t pretend to know all the stories, but I witnessed a few, like these.

  • Mom played on a basketball team when we lived in Spain. The year after they took the national championship, the league established a rule: no Americans. I think it was a more general “no foreigners” rule, but she was the reason for the rule.
  • Mom returned to college in her 30s after we moved back to the US. She played on all the teams. It was her senior year, basketball season. She was the older woman in a league of 20-somethings. Mom stole the ball. She was wickedly good at dribbling the ball right out of your hand. This woman from the opposing team wasn’t having it. She grabbed mom by the arm and thrust her down. Mom was out for the rest of her senior year, arm in a cast. I remember doctor visits and bone spurs. But she was steel, cheering her team from the bench at every game she couldn’t play.

Can’t we stop? Stop this careening, this fall? Where are the referees to call this rough game? It’s unfair to grab a mom by the arm and snap her like that.

Mom still shows up, even if she’s benched. She fights hard because she doesn’t like to lose. She wags her tongue, “I don’t know what I’m saying,” as she fights for the words, as we fill in the blanks.

I listen to and read stories about other Alzheimer’s victims. They have common threads, but the patterns are singular. Mom’s story is uniquely hers.

I wondered, Why is she still telling us “I can’t find the word”? but I get it now. This is how she loses: not without a fight. Even if she can’t win all the points, she’s holding this damned disease back with every muscle she can until they call the game.

It’s hard for all of us.

Some days, after my heart drops to the floor, and I collapse into a groan of sadness, I kick my heart to the corner. What’s wrong with you!?

Sure, it’s shocking to come back every two weeks to mentally assess what’s gone, but Dad is witness to every drop that spills, every piece that falls away, waking next to her in the bedroom, watching her struggle to dress in the bathroom, helping her prepare dinner in the kitchen because she no longer can. He watches this show live. He sees step-by-step the dismantling of her beautiful energy.

I pick my heart up from the corner, coddle it a bit. This is stressful, but we’ll get through it.

Losing is hard.

I’m not the first to ask myself, Would it be harder if I lost her all at once? Boom! Heart attack. Snake bite. Car accident.

But who am I to compare?

Losing is hard no matter what.

Sudden is tangled in regrets and things unsaid. Gradual is woven with threads of impatience and anger.

And how can we compare experiences?

Losing is hard whether you’re the one who slept next to her for sixty plus years or whether you’re the one who looked up to her for nearly as many.

I kicked my heart to the corner today because I’m not always easy with this. I fall short of heroic, but I can hold space for forgiveness.

Forgiveness for myself, as I breathe through the grieving sob that numbs my thighs.

And for my dad? For my dad, space as he rises and collapses day-after-day next to this disease, empathy when he kicks his own heart to the corner, grace when he needs time to recover energy for the next steps.

She’s not going down without a fight.

We’ll come to a day when all of her words are blocked by the gravel in her throat and the fog in her mind. Maybe I’ll need a moment to curl into my thighs and sob, maybe I’ll take it. But on that day, I want to be her hero. I want to show up like she did in her cast for her teammates. I want to sit next to her on the patio, hold her hand in the long stretch of silence between the lawn chairs, even if we can’t both be in the game. I’ll cheer her on. I’ll point at the bats for her as they fly into the dusk.

Losing is hard.

Losing is a lot to live through. But who she was and what she will always be in my heart are more.

©Pennie Nichols. All Rights Reserved. 2021

 

 

House of Memory Shards

“I had this friend,” mom told me on our drive today.

My ears perked up, and I wished I had brought along my recorder or at least learned the strokes to use my phone as a recorder.

Memory shards surface.

I smiled at her and focused hard. Sometimes, often on drives, she tells me stories from her childhood and youth. A couple of Novembers ago, we drove out to a Christmas-tree farm, close to where she grew up.

We had an old bike with a no chain,” that story began.

She talked about how they would walk the chainless bike up the hill on what I have to presume was a dirt road, then take turns flying down the hill on the bike.

I’m fairly certain the bike was also without brakes.

They were a single-car family. I’m not sure they had a phone yet. Maybe my grandfather was at work with the car, or maybe my grandmother had the car shopping. I don’t remember what mom told me (she doesn’t either), but there was no car. The bike had no brakes. And my wiry, red-headed mom wiped out flying down the hill.

Her brother and maybe some friends ran down the road to fetch someone to help, someone with a car or a phone. Even though I didn’t grow up with cellphones and I handled many things without one well into my forties, I can no longer wrap my head around managing a crisis, big or small, with no cellphone and no car.

“Somebody told my dad…”

She doesn’t remember how he found out, but he showed up at the hospital where they had taken her.

Was it the excitement that sheltered that memory from the Alzheimer’s storm? Why do some memories —old and new— unexpectedly stick while others are swept away?

The memory of a friend

Today, I thought I was going to get another childhood story. We were driving along rural highways on our way to visit my cousin, and while these roads don’t run close to Pine where mom grew up, they look similar.

Mom has rarely spoken about friends. I was excited.

“My friend, her man is sick. He can’t do anything. She does everything for him, makes all the food, feeds him…”

We turn into my cousin’s driveway.

“Oh, this is it! I can’t believe I get to see her again so soon. She has a such a big, big…”

“Heart?” I try to fill in the blank. She has more and more of these blanks.

“Yes! She’s a wonderful person. He doesn’t know how lucky he is to have her.”

Which memory is it?

This wasn’t a story about mom’s friend.

“We’re going to see your sister’s daughter,” I had explained several times during the thirty-minute drive, repeating my cousin’s and aunt’s names.

“Oh, I guess I’ll remember her when we get there,” she said. She usually does.

As we pulled up, I explained where we were. When my cousin came out, she seemed to remember her, but following the visit, I know it was in spurts, incomplete.

The memory shards

Half hour into our visit, my uncle joined us. He has been widowed for a year and a half now.

Mom had recently talked about him by name. “I haven’t seen him in a long time. But he seems to be doing well.”

I think my uncle is strongly tethered to her memory in that house of shattering mirrors. Losing her younger sister has compartmentalized him in the best way: the memory of him is protected. Or maybe the fear of widowing or becoming widowed keeps him clear.

Regardless, mom knew who he was today. She was happy to see him and became more engaged while he was there. We had a nice visit.

On the way home, mom said, I’m so lucky I got to see her two times in a row,” referring to my cousin. Then she added, “I didn’t remember they were brother and sister.”

A hero and her bloody memory shards

I cried inside today, but I didn’t drop tears.

Here’s the thing. I was amazed. She’s still fighting, like that hero from a familiar story who you know will lose the battle. It’s close to the end. She’s so bloody she’s hardly recognizable but the hero will battle to the bloody end.

I saw through the cracks in the mirror today, had a glimpse of mom’s battle. Mom hasn’t stopped fighting this damned disease, wrangling that stubborn bull. She battles to grip the shards she has left, even when they bloody her fists. She fights to put together the pieces of a story, the characters in her stories, and the bloody pool of memory shards at her feet.

“They’re not brother and sister. That’s her dad, Mom. She’s your sister’s daughter,” I corrected her. I shouldn’t have.

We drove in silence much of the ride home. I’m sure we were both thinking about the visit, my cousin, my aunt who died, my uncle who survived her, and mom’s struggle to remember.

Just before we turned in, mom said, “I’m so lucky to see her again. I had forgotten they’re mother and daughter.”

I’m still sorting this out.

©Pennie Nichols. All Rights Reserved. 2021.

She stopped making brownies.

What have we lost?

OK, let’s take an inventory.

Sure.

Helps us know where we are.

I get it.

So, tell us.

Fine. Um. Started, maybe three years ago. It’s hard to know. She was so anxious, anticipating its arrival, it’s hard to know when it arrived. What part of it was imaginary? What part of it was actually it?

Yes, but, inventory. What have we lost?

Are you kidding? Memory, of course.

I know. We all know that. But how did it come apart.

Oh, the pieces of it. None of us thought to take notes. But something like, well, first, confidence. I think that was first to go.

OK. 1. Confidence.

Yeah, and I know we’re lucky, because in some cases, they don’t lose the confidence. They think it’s everyone else.

You’re correct. You’re lucky. Then what?

Just about everything else starting fracturing, chipping away. Once you lose your confidence, you don’t trust yourself with anything.

But what did it look like.

Small things. Like recipes. She couldn’t remember if she’d already added that cup of flour or sugar. But she knew she wasn’t sure. She knew she needed help and she asked.

You’re very lucky.

We know! So I would come over and help her, walk through the recipe. Even though she couldn’t trust herself, it was amazing. Sometimes she’d remember those little tricks that aren’t part of the recipe. Make sure you… and After you finish…, you have to…

OK. So, 1. confidence, which meant you had to help more. Then what.

Like I said, we weren’t taking notes. It gets jumbled in my mind. She started losing things. I noticed she puts things away in odd places.

So, keeping up with personal belongings.

They weren’t always personal. Dishes. Pans. Corn cutters.

We’ll just call it organization. 2. Organization. What went next? You said she was doing puzzles. Did she stop doing puzzles?

Not at all. But they’re not really puzzles. She likes word scans. She works on her word scans, even today, desperately. I think she thinks they will save her. Lift the fog. I know they help, but I don’t think they’ll do what she wants.

That’s good. So she still engages. She still knows?

Definitely.

You’re…

I know. We’re lucky.

She stopped making brownies.

Can you remember what went next?

Hard to remember exactly. Her voice, maybe. Her words.

Not sure I understand.

It’s like her voice is out of practice. Gravel collects in her throat. Her words fall over the uneven path, losing their way. She’ll start a story or a thought, then cough because gravel, then the words are gone. Sometimes I know where she is going and can fill in the blank. A simple word or name —rug, Steven, doctor, tractor— might put her back on track. Lately, though, she gives up.

So 3. Language. She’s struggling to put complete sentences together.

Yes! She starts then loses the thread. Sometimes I can help, but more and more, there’s just not enough information.

She’s still driving?

No. That was easy. Her driving was still fine, but the doctor explained that she could be sued, even if it wasn’t her fault. That was enough.

So, 4. Driving. You’re lucky about how that went down.

We know.

What about cooking?

Measuring

Complex cooking, number 5? She still warms things up. But she doesn’t cook dumplings, butter beans, or corn. Laundry is questionable. Number 6. The floors… Listen to me. All the domestic things! We’re measuring her progress in domestics!

It’s just a way of measuring.

This is the saddest conversation.

I know.

No you don’t. You’re hitting the domestics. All the wifely things that are falling away. Did you know she was a PE teacher? She used to have a routine. Sit ups, push-ups, stretches, weights. Every morning. We should have noticed when that stopped.

You’re right. That’s important. So 7. Exercise.

I don’t know if that was 7 or 2 or 10! It’s gone. My point is… I don’t know what my point is. When was the last time she balanced the checkbook? That’s significant. When was the last time she refinished a piece of furniture on her own? Made a 24-hour drive to visit her son? Everyone asks the last time she did a load of laundry, but she was more than a housewife!

I understand she still mows.

She does. She’s wrecking the mower but she does. She feels useful, and we don’t want to take that from her. I’m sorry. Sorry I snapped at you.

No worries. Understandable. Back to inventory…

I wonder when she dribbled her last basketball, won her last ping pong game. She played tennis! Coached. Helped me teach swimming lessons. Even babies. I can’t remember the last time she got in the pool.

She was an athlete, I see.

Yes. Before when I snapped, I said “we’re measuring her progress” but that’s not true, is it? It’s the progress of the disease. We measure her diminishing, opposite of progress.

Yes. We’re just taking inventory.

Of her losses. Well, here’s one. Brownies!

Sorry?

She stopped making brownies.

She used to make them for church. And this isn’t about housewivery. It was her contribution. The kids asked for them. That was her thing. That made her somebody. A point of pride that they loved the brownies. She’d always explain to anyone who asked, “Duncan Hines, dark fudge brownies.” Boxed brownies! Easy! She made them for years until a couple of… , lord knows, maybe as many as six weeks ago. Maybe three months. She stopped looking for the boxes on the shelves. Stopped making them.

So, number 8? I think we’re at 8. Brownies.

She stopped making brownies.

I’m so sorry.

©Pennie Nichols. All Rights Reserved. 2020