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.

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

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.

Dear Dad, I see you.

Dear Dad,

I’m writing instead of calling, because I would fall all over myself before I managed to share these words. Today, I’m reverting to my childhood and leaving you a written message. Imagine finding this on the dining room table or taped to the fridge. Maybe on your pillow.

The message is simple:

I see you.

But I need to explain, a trait I inherited from you. So give me a minute.

When I’m there, I mostly spend time with mom, little projects to keep her afloat, errands to go through her grocery list. But, when I’m there, I see you too. I do.

When I write, I mostly write about mom and her battle. But I know, we all know, this is your battle too. She may be the warrior, but you’re her brave body guard.

And inside your armor, I see your heart. It’s breaking.

I’ve always seen you. And even from here, 90 miles away as we shelter at home, I see you.

The isolation.

Isolation suits me. Even in my childhood, sprawled in my room with notes and albums or just playing in the those upper stories of my brain, I was never lonely alone. Another gene you shared with me.

In isolation, I’m nourishing that inner artist child, finishing projects, reflecting. Even as I thrive and go back to my roots in isolation, even from this distance, I see you.

I see you and mom, over there, just two people marooned on 100 acres. Isolation isn’t kind to you.  It’s cruel, even. The distance from family and community diminishes her mind and nourishes her disease. That distance from family and community sits heavy on your already-burdened shoulders as you shepherd mom through these lonely days.

I’m grateful that you’re there with mom, and I see you. I know your heart aches under that armor. I know you’re weary from the weight of the armor.

You answer the same questions twenty times a day.

When’s Pennie coming back to take care of the garden?
Where’s my car?
How am I going to manage all that? gesturing the abundance of plants in the garden.

I see you. Patient. Feeling remorse when you lose that for a moment. It’s OK. We do the best we can.

I see you. Managing. The cooking. The money. The farm. The projects. Mom. You’re strong and smart. But some days you’re drained.

Before this, standing at mom’s side to battle the disease was already taking a toll. In isolation, the toll is great. Almost too much.

I see you, and you’re powering through. You gave me that too. Bracing shoulders, mind, whole body and armor, and powering through a tough patch or a challenging project. I see you.

I’m grateful for you.

Thank you for taking her to her neurologist this week.

Everyone in masks. The doc offered an elbow bump instead of a hand shake . . .

She may not tell you, but I know she’s grateful too. Even though the news is heavy, and perhaps a little guarded since she’s with you.

As expected, she did not score well on her test.

But I see you, dad. By her side, every step of the way. In the kitchen. At the doctor. In the grocery. In the garden.

I’m grateful.

Your world with mom is crumbling in your hands, at your feet, before your eyes, and you are there. I see you. You hold her, help her, shepherd her, encourage her.

When you finally sit alone, isolated in your office, I see you. And it’s OK.

  • When you pound an angry fist on your desk, it’s OK. I see your frustration and anger. It’s OK —it’s normal!— to feel angry now.
  • When you drop your chin to your chest and just let the tears come, I see you. It’s OK to feel sadness and grief.
  • Sometimes you find the isolation in your office comforting, and you sigh. Relieved. Alone at last. I see you. And it’s OK. It’s OK to take a break, to replenish, to be happy alone for a minute.

You shield her from your emotions, tucking the anger, the grief, and the relief, that mob of emotions, deep inside your armor. It’s OK to shield her. But I hope you know, I see you.

That’s all. I just want you to know I see love you.

Pennie

©Pennie Nichols. All Rights Reserved. 2020.

Life Lessons: Mom and a Song

There’s a song I’m not crazy about but I can’t get it out of my head.

I had mostly succeeded. Then Spotify played it again and now the ear bug.

Since I haven’t been writing about anything, I decided I’d write about this song and a lesson I learned from my mom.

The song starts:

Like the moon in the sky in the afternoon in July

From the get-go, anyone who knows me might ask: “What’s your problem? The moon? You love it more than ice cream. July? Your birthday month!”

But if you know me, you’re also asking: “Why haven’t you been writing?”

So many answers:

  • Something personal I can’t get my head around.
  • Don’t want to hurt people I love.
  • Travel.
  • Life’s complicated.
  • I’m busy.
  • I’m thinking.

But mostly,

  • I’m a coward.

The song goes on:

A little darkness hangs there above me.

We all have a little darkness. I’m not unique. But sometimes that darkness falls heavy, tangles up around our ankles making it hard to move forward.

Although my current circumstances are dreamy (hopping from island to farm), my ankles kick at the dark blanket, looking for release. Was it this song?

I don’t like it but I don’t hate it. It goes:

I know you hate to see me cry
Don’t wanna look you in the eye

There it is. Don’t wanna look you in the eye.

Writers often (if not always) feel undressed when we put our words out there, stumbling graceless through our darkness. Don’t wanna look you in the eye.

I set out to write vigorously about the journey my parents are on, the Alzheimer’s bullfight they’re in. From a distance that seemed easy. Just write about the changes and challenges.

I wasn’t prepared. That’s a legit excuse.

Closer to the truth? I’m a coward.

As you watch someone you love diminish, unexpected things go on inside yourself. Regrets. Lost chances. Helplessness.

It’s natural to want to do the big thing. If we can’t save the person, we want to do that thing that makes an emotional, qualitative, quantitative difference.

Failure? Not the most tasty writing topic for me. But who are we talking about?

  • Mom? The ideal ALZ patient, facing her bull knowingly and hopefully, compliant to treatments, aware even as she’s losing, some days more than others.
  • Me? Supposedly here to help, but what do I do? Feels like little. Am I cowering in the corner?

That was a trick question. This is about a lesson from mom and a song.

I’m not crazy about this song but I love it. Maybe it struck a chord because I first heard it one day when I took mom to visit her baby sister, who has lung cancer.

Mom and her two siblings (this is where I smother my coward and say some things) are independent, DO for themselves, workaholics. They are the best but sometimes the most challenging. Don’t expect to kick back and just relax on vacation with them! Gotta DO something! And they have hard edges. This quirk may be one reason mom has faced her bull with open eyes, because she is determined to DO things. Take medications and supplements, work puzzles, stay active, move.

My aunt too. She’s done all the things they’ve told her to fight her disease.

But it’s not working. That magic thing that they did all of their lives is not working. It’s not working for mom. It’s not working for her sister. There is nothing they can DO.

Earlier this summer, when my mom and I arrived to visit, my aunt wasn’t in a good way. She fussed about her frustrations. I could see mom becoming more and more agitated, wanting to DO something to soothe her. Thinking that wouldn’t be possible, I announced: “We should go so you can rest.” But mom ignored me. Instead, she asked her sister:

Do you want me to rub some lotion on your legs?

My aunt:

I don’t care!

I didn’t want to include the exclamation mark, but it’s more accurate than not including it. And she said it more than once.

I don’t care!

This was both true and untrue. As mom and I looked for the lotion, my aunt continued to protest:

Don’t worry about it. I don’t care. It doesn’t matter.

Mom didn’t relent. She found the lotion, sent me to fetch a towel, and began rubbing my aunt’s feet and legs. Mom, hardly able to remember what we discussed two minutes ago, was attentive, asking “is this good?”, arranging the towel under her sister’s legs.

I teared up as my aunt relaxed, sank deeper into the recliner, and sighed: “That feels so good.”

I learned.

On that same day, I heard this verse:

I don’t need you to solve any problem at all.
I just need you to sit here and love me.

My mom is diminishing. My aunt is diminishing. Nothing I can DO will change the enormity of their diminishing. I can’t fix it. I can’t solve that problem.

But I’ll sit.

And I’ll love.

I also have the DO gene, so this is challenging.

[deep breath]

I’ll honor the lesson I learned from my mom and a song.

I’ll be brave. I’ll just sit here and love them.

©Pennie Nichols All Rights Reserved 2019

The song is “Sit here and love me” by Caroline Spence. I say “I don’t like it” but, really, I love it. Thanks, Caroline.

Alzheimer’s Bull

Is it OK to ask? Is it Alzheimer’s?

How’s she doing?, you ask.

The answer depends on how you’re asking the question?

Are you asking about how her days are going?
Mostly OK. Although the answer sometimes sounds like a question: Mostly OK?

Maybe you want to know how she’s feeling?
She mostly feels good. You can hear the white-noise rumble of worry. But she’s happy. Now and then (not every day yet) she has a clap of confusion, fear even. But she mostly feels fine.

Or maybe you aren’t asking how she’s feeling. You mean: How’s her body holding up?
Great! She’s slowing down a bit but she can still run circles around me.

You know that, though, don’t you? She’s always been fit as a fiddle. You aren’t asking about that at all, are you? Maybe you feel a little confusion about what (and how) you’re asking, teetering along the edge of morbidly curious.

You ask, How’s she doing?, but you’re curious about where she is on the Alzheimer’s spectrum.

Is she still driving?
Does she still bake ginger snaps?
Will she know who I am?

You’re confused about what and how to ask, but yes, yes, and yes. Like I said, she’s mostly ok.

She misplaces more things than she used to. Sometimes she repeats her questions. The forgetfulness surfaces most when she’s anxious. Before a gathering at home or an event she needs to attend. Any disruption to her routine, really.

She’s pacing and repeating questions today because I took dad to the ER at 3 a.m. this morning. She’ll probably misplace something before I get home.

Placebo

And how are YOU doing? you might add.
I’m mostly OK.

But I’m not sure how you’re asking that question either.

Perhaps it’s: How are you feeling?
Helpless, to be honest.

Or maybe you mean: How are you helping?
Honestly, I don’t know how to help. I just show up for a while each month.

I’m a placebo. I don’t really do anything. I’m a beneficial effect even though I can’t attribute those benefits to anything I do. I help because mom believes I help. Like a patient who feels the effect of the placebo.

Alzheimer’s bull

Her Alzheimer’s doctor says we’re lucky. Unlike many of his patients, mom is not in denial. She’s facing this with her headlights on, staring deep into the bull’s eyes, fingers clenched around his horns. Aware. She’s a slight thing; the bull is not. She knows her chances, but she’ll make him work for every lucid drop he tramples.

We’re lucky because mom is engaged in her treatment. Mostly lucky. Sometimes the awareness makes her anxious. Anxious because she’s sure she’s about to forget something if she didn’t already forget something.

How’s she doing?
Sometimes, she’s anxious.

Anxiety is a trigger for misplaced purses, repeated questions, and stunted errands (What was I looking for?).

Anxious twirl

The cycle is vicious.

I’m holding Alzheimer’s  by the horns. I don’t want to forget anything. Did I forget something? I feel anxious. I can’t find my purse. Did I forget something? Sometimes I forget but I’m gripping Alzheimer’s by the horns. I don’t want to forget. Did I forget something? . . .

Anxiety is like the picador’s lance in the bull’s back. These picas may provide clues about which side the bull is favoring, but they don’t make the bull weaker. Just more anxious.

A good night’s sleep helps. A steady diet of brain puzzles and predictable tasks deflates the bubble of anxiety. Sometimes I can help. Sometimes more than just by placebo.

Party

Mom turned 80 this month. If you turn 80, you deserve a big party. It’s significant.

Mom deserved a party. But she also didn’t. Expecting a big party would spiral, the bull making hooved donuts, mom holding his horns with all her slight might, spinning through the air dizzily, helpless.

How are you doing? you might ask her.
Who are you? she might reply.

She didn’t deserve the anxiety of expecting a party. So we pretended there wouldn’t be one, until thirty minutes before the open-house (not technically a party) started.

Who’s coming? she asked.
Everyone. I said.

And they did. And the bull didn’t have time to swing her through the air and drop her dizzy in the middle of fifty plus family and friends. She only had time for wonder.

How did you do that?

An Alzheimer’s silver lining? She’s never been an easy person to surprise, but that day we did. The bull was napping as she navigated gracefully through the waves of family and friends who came to greet her on her significant day.

You should have been there.

Changes

Being here on a regular basis, the changes aren’t as shocking.

The change is not sudden, like the one you might feel if you’ve been away for six months or more. And it is sudden. The change isn’t gradual. Yet it is. It’s bull.

The bull takes long naps in the pasture. But events are inevitable and can’t always be a surprise. Events wake the bull. Sometimes suddenly, with a snort. Or it can be gradual, lazy stretches, then a slow spin. Sometimes only slow, but if he feels the pica, he’ll jerk anxiously into a faster spin. I dread the day when there is no spin and he just charges full force. Even a good night’s sleep and a full bottle of placebo won’t help then, but for now, we’re still napping and going for an occasional spin. The changes are sudden and gradual, but not as big as the bull yet.

Corn

Last week we harvested and put up corn. Putting up creamed corn involves several steps as well as some specific timing and methodology. That’s enough to make the bull pound his front-left hoof hard into the dirt, especially since mom’s picky about her creamed corn. This time, we also had the utility-room sink situation.

We need lots of ice.
I already bought the ice. It’s in the freezer.
Where are we going to put it all? I need my sink. You should have fixed the sink.

The bull is beginning to spin her.

I’ll get some big tubs or coolers.
They have to be big. You need to get ice.
The ice is in the freezer.
This is going to be hard. How are we going to do this without the sink?

Once she begins to brush the silk from the ears, the bull calms down. There’s an occasional snort (Those tubs won’t be big enough. What we needed was the sink.), but mostly the bull naps through the blanching, creaming, and bagging, waking occasionally to repeat three or four questions. It’s the planning that sends the bull into a twirl. Busy hands . . . something (I forget) mind. Busy hands are good.

Cutters

At the end of the first corn operation, we cleaned up.

Go on. I got this.

The bull seemed to have been lulled into a deep slumber by the predictable rhythms of blanching, cutting, creaming, and bagging. We would all sleep well that night and start the next day fresh.

It started much the same.

We need lots of ice.
I already bought the ice. It’s in the freezer.
This is going to be hard. How are we going to do this without the sink?

Then the calming rhythm settled over us as we picked, shucked, and de-silked. Inside, we set the blanching pots to boil.

Where are the cutters?
I don’t know. Where did you put them yesterday?
I don’t know.

Twirling bull

That bull wasn’t as deep in slumber as I had thought. We can’t find the cutters. It’s hard, after all, to keep things from flying out of control and out of sight when you’re gripping the horns for dear life. Dad dashed to the Tractor Supply to buy their last corn cutter. We would need at least one to replace the one we had borrowed.

While we searched high and low (literally), mom had turned my blanching pots off.

They’re not boiling yet, she pointed out.
No, you turned them off.
I can’t do anything right today.

My heart splattered on the floor. How do I step this one back?

The pots boiled soon enough. I blanched, and she cut. She decided to use her favorite knife instead of the new cutter.

You didn’t find the other ones yet?, you ask.
Nope. I even looked through the garbage and in the freezer.

Caretakers

Dad only picked half as many ears on that second day, probably a good thing. We were all tired, and dad wasn’t feeling right. That’s the other question you might ask.

How’s he doing?
Honestly, a little less than OK. This is hard on him.

We neglect the well-being of the caretakers. My grandfather (mom’s dad) took care of my grandmother as the bull twirled her in vicious circles. I saw the weariness climb like choking vines up his limbs, around his trunk, as he cared for my grandmother.

How’s she doing? everyone would ask.

I don’t think very many asked him, How are YOU doing?

Go on, I got this, mom said at the end of the second corn operation.

My heart was still on the floor. Why did I stick that extra pica in the bull’s back?

I’m going to finish some work, mom. Then I’ll shower and take you to Dirt Cheap.

Something to throw off the bull and let dad rest a bit.

Salvage stores and recoveryAlzheimer's

Mom loves salvage stores and she brightened when I suggested it.

I hate to shop, but a salvage store isn’t like shopping. It’s more like an adventure, and it’s perfect for anyone who’s been spun for two days by an anxious bull. You don’t have to remember the shopping list. You don’t need a shopping list at all because you can’t know what you’ll find there.

The inside is much like any scrambled mind.

  • Diapers stacked next to bags of pinto beans, next to bottles of Armor All. On purpose.
  • Plastic spatulas, hair clips, rat traps, and shoe laces intentionally hung on the same rack.
  • Furniture in-between racks of dresses and purses.

It’s not necessary to remember where things are because they’re not where you would remember.

We laughed and oooh, look!ed for a couple of hours, hours well spent away from corn cutters, far away from my computer. The bull was sound asleep.

We came home with beeswax foot products, chocolates, paintbrushes, boots, and more. We also brought dinner to dad.

How’s he doing?
He’s mostly OK, but he needs some attention.

What can I do?

They’re watching dad today because the electrical system in his ticker is off a bit. Atrial or one of those flutters. Mom has been pacing since 3am. After spending time with dad at the hospital, I bring her lunch.

You’re a blessing, she says.
No I’m not, I think. I’m a placebo.

I’ll stay here until they release dad tomorrow. He’s doing OK but it’s better to be here.

I’ll linger until he’s home with mom. I don’t want her to spend the night alone.

I’ll sit here, doing nothing really, until the bull dozes off again.

How are you doing?, you ask, maybe a little unsure, a little confused about what and how to ask. 

It’s OK. You can ask.

I’m OK. I’m just trying to be here for mom. For dad too. Trying to pay attention. 

I’m just a placebo, but even placebos can calm an anxious bull.

©Copyright Pennie Nichols. All Rights Reserved, 2018