Full Moon Goals

I should leave her alone.
I run out,
all go and gullible,
excited to capture that perfect shot.
I never do.
I should stop wasting her time,
requiring the poses.
The peak through the clouds.
The burst of light through haze.
She rises bright and full.
Snap snap snap.
Merely mediocre.
I didn’t take the lessons.
I didn’t read the manual.
Snap snap snap.
Why can’t I . . . ?
If only I could capture that mist over the water.
Snap snap snap.
And the bursts of firefly in the dark field.
Moon shadows ripple on the water.
Snap snap snap.

Enough.full moon goals

I can’t do her justice.
I trudge back through the field,
turning to see her
again and again.
Snap.
Through the dark fields
where the mist captures her light
and fireflies dance in the darkness.
Snap snap snap.
Dark sparkless frames.
I should stop wasting her time.
I shouldn’t come out here snap snap snap.
I should leave her be.
Bright. Full. Rising.
Graceful journey that eludes my lens.
I should stop wasting her time,
I mumble, as I rest my lens,
and drift into slumber,
my heart —bright, full, rising—
dreaming of chasing the perfect shot
of her next full journey.

©Pennie Nichols. All Rights Reserved. 2019

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.

The Longest Night

Tonight is the longest night of the year and the moon is just about full, almost super.

Professional photographers have been known to share and exchange stories of the extreme efforts they went through in order to get the shot. Awkward positions, uncomfortable weather or surroundings, painstakingly long waits. I’m not a professional photographer. In fact, I’m still a kindergartener photographer and will probably only graduate to 1st grade before I die. Still, I have some images to share, not because they’re great and not even because of the “extreme” measures I went through to take the shot(s). But to breathe out a little.Longest night

What’s my story on the longest night?

Barbed wire, ant beds, eye-high grasses, briar patches, highways, and muddy ditches. There was daylight when I climbed over the barbed wire fence, but I circled back and crossed the ditch towards home in darkness. I could have fallen face-first navigating those briar patches. Or slipped on the steep ditch into the mud. Or worse, tripped into the highway just as a giant diesel truck came barreling down the hill. I won’t take any photos of my ankles that bravely stripped through the briars, but suffice it to say, I survived my obstacles and came out on the other side with a couple of photos of the cold moon of the longest night.

I haven’t shared any thoughts on my blog lately, hence the need to exhale a bit. I process what I’m thinking and feeling through writing, but the emotional barometer has been high, so I’ve let the pen rest and allowed my thoughts to steep.

I will endure whatever awkward position, discomfort, or stay I must to wrap my head and words around the thoughts and emotions that have tied me up. But tonight, there are moon shadows and meteor showers. It’s cold out and hard to dance in the moonlight for long or sit and stare at the stars more than ten or fifteen minutes, but the chill on my cheeks feels fine.

My moon shadow casts long and clean, and I look forward to the arc of the sun climbing higher and longer through the days. I look forward to the light.Longest night

©Pennie Nichols. All Rights Reserved. 2018

Eat the Ice Cream

If she brings it, eat the ice cream.

This morning mom comes over with ice cream and a chocolate.

What’s this?
Ice cream on a stick. She smiles.
For breakfast?
Why not?

I can think of so many reasons why not, but I don’t speak them.

I put the ice cream in my little beverage refrigerator. I don’t have a proper refrigerator/freezer at the moment, but that’s another post.

It will melt in there.
I know, but I need to finish my coffee first, I say, sorting out in my head whether I’ll really eat the ice cream or simply toss it after she leaves.
And, here’s a chocolate.
Thanks.

I rarely eat ice cream or chocolate, especially not for breakfast, but that’s what she brings me. This isn’t a remembering thing. She knows these aren’t proper breakfast choices. But she loves them. Especially the ice cream. Ice cream on a stick. If you tarry at her house long enough, she’ll offer you one.

Mom leaves. I can see the ice cream on a stick through the glass door of my little fridge. I sip my coffee.

I don’t want ice cream for breakfast.

Then I remember that a week ago, my son had stayed over after bringing me from the airport. Mom came by in the morning hoping to visit with him a bit. She had ice cream.

What’s that for?
It’s for Sam.
He’s still sleeping.
Oh, she looked disappointed.
But you can wake him up. I’m not sure he’ll want ice cream this early though.

She knocked on his door. I sat back down at my desk, sipping coffee. I could hear them talking.

Thanks, Mama Nick! Hug from pillow.

After she left, Samir sauntered into the room where I was working.

So, how was ice cream for breakfast? I asked, expecting at least a partially snide answer.
It was great!

I don’t know how to help.

This journey is unbalanced. I’m sure I’m learning more from my mom than she’s getting from me.

I make little spaces in my day for mom, but I don’t really know how to help. I take her to visit her sister. We stop for lunch. We shop for groceries. I look for activities she loves to do. We’ve lined up some furniture to refinish, and at least once a week, when I’m here, I invite her over to make jelly with me.

I don’t have to remind her to come over to make jelly. She remembers. Most times, she shows up with dinner. While I eat, she washes all the dishes that have collected in my sink to make room for jelly making.

Tonight we made jelly. She scrubbed the ginger I brought in from the garden, stirred the blueberry juice and sugar, poured the jelly into the jars. Like I said, it’s unbalanced. I’m the lucky one.

I don’t know how to help mom, so I make space in my head. My first notion this morning is to tell her, Thanks, but I don’t want ice cream. Just take it with you and put it back in the freezer when you go home. I stifle that notion and put the ice cream in the little refrigerator.

For after I finish my coffee, I explain.

After she leaves, I have the toss-the-ice-cream-on-a-stick option. Then I remember Samir.

It was great.

I eat the ice cream. Samir was right. It is great. I eat the chocolate too.

Be present.

I’m not boasting about my choice to eat the ice cream nor about the small spaces I make in my days for my mom. I’m only giving these things voice because I mostly fail when faced with these choices.

Can I call you later?
Not today.
I’m swamped.
I have a meeting.

I’m giving the breakfast ice cream voice because my mom didn’t teach me a lesson exclusively for Alzheimer’s caregiviers. The lesson is universal.

Be kind at encounters.
Be grateful for gifts.
Be thoughtful in response.
Mostly, make space on your calendar and in your head for your people.

Make space.

Sit down with the child and make the marble maze together. Fix some coffee and put your good-listening ears on for your friend. Show up with lunch to visit with your aunt. Take a day off to help your dad or your daughter.

Eat the ice cream your mom brings for breakfast.

It will be great!

©Copyright Pennie Nichols 2018. All Rights Reserved.

Celebrate the Lessons

How would you celebrate a milestone birthday?

My dad will celebrate a milestone birthday this week.

“Celebrate” applied loosely here.

  • he’s not nuts about birthdays
  • his idea of a fun vacation might be going to his niece’s house to help her with post-hurricane repairs (a recent discussion), which means his idea of “celebrate” is a little skewed.

I knew I couldn’t pull off a second surprise 80th birthday party in a single year, so our idea of celebrating his 80th was a family gathering at my cousin’s new home in Charleston, close to the coast. A few days of fishing, beaches, kayaks, and paddle boards, evenings on her porch sharing the catch of the day and the joy and melancholy of new and old stories.

Hurricanes and celebrations

Florence  stirred up the fishing and kayaking waters but didn’t damage my cousin’s house (see previous note about his idea of fun vacations). So we postponed the trip. How to celebrate now?

It’s no big deal. Really, just the thought that counts.

But darn it. I want to do something special!

My Chicago daughter reroutes her flight from South Carolina to Louisiana. All three children under a single roof along with my folks: that’s special.

The celebration isn’t an inshore fishing excursion on the east coast, but we nom and yum over steelhead trout and baked vegetables, laugh and sing over the flattened white-chocolate strawberry cake, and celebrate one of the most intimate, joyful family gatherings in years.

As delicious and heartwarming as our meal is, that isn’t the only highlight of the day, maybe not even the brightest for dad.

As my Baton Rouge daughter and I arrive earlier that day, Wayne, mom and dad’s farmhand, is coming up the hill on the tractor. He flags us down.

You don’t have any water!!

Water, Wells, and Lessons

For my house on the farm just down the hill from mom and dad, no water also means no AC. A water crisis wasn’t how I had hoped to celebrate dad’s birthday.

A water crisis with any other folks might indeed be a crisis, but today, there is zero panic and 100% can-do.

I’m not sure what dad had planned to do that day before his birthday meal but he never moans or groans about this disruption. On the contrary, I think he enjoys the opportunity to share and teach us a few rural-life lessons.Celebrate the Lessons

  • The water comes from the well.
  • The well feeds from the aquafer below the property.
  • The well is about 150 feet deep.

150 feet!! Wow!

Yeah. That line goes all the way down.

Wow!

  • When the pump dies, we pull 150-feet of hose and electrical wire up through the well to repair or replace it.

Celebrate the LessonsAnd that’s the pump?

Yes.

And this . . .

That’s the holding tank.

We don’t have a water tower. We have a blue tank in the gazebo, camouflaged under a “table.” But not today.

But where’s the well.Celebrate the Lessons

Down that hole.

That was a lot of digging! How did you do it?

Wayne, getting good giggles from our city questions, chimes in with dad to explain derricks, augers, aquafers, and sand as we snap photos with our phones. We have so much to learn.

Pipe clamps secure the heavy pump on the end of the hose.

Can’t let the pump slip off the hose and into the well. Then you’d have to call the well guy to fish it out, and that’s the last thing you’d want to do.

Celebrate the LessonsBlack tape to secure the wires snugly around the pump and pipes.

So they don’t snag on the way down or on the way back up next time.

Next time? Next time we celebrate another birthday or have a family gathering?

Everything wears out eventually.

But today, we fix it.

“We” applied loosely here.

  • Most of the “we” watch dad and Wayne work in synchrony to fix it.
  • Most of the “we” would have panicked, would need to call the well guy, but would need to make a lot of phone calls and google searches to even know that there is a well guy.

All of the “we” gather in the rain (did I mention the series of small thunderstorms?), the less informed of us helping in tiny ways, learning lots, and warming dad’s heart as we give him audience.

He’s 80 today. We have so much to learn from him still. I’m glad we gathered, I’m glad we listened, I’m glad we celebrate another year with him.

Happy Birthday, Papa Nick!! Thanks for letting us celebrate with you! Thanks for the lessons.

©Pennie Nichols. All Rights Reserved. 2018.

 

Open Letter to a Lost Friend: Happy Birthday

I’m writing this at the end of what would have been your 62nd birthday.

You would have passed a good time today.

You probably would have gravitated to the music. Found that band that was playing at that place. “Won’t you join us?” Then dance and smile, never letting on it was your birthday.

Your sweetheart sprinkled a little of you on the stones of peace tonight.

I couldn’t be there, but I was.

Walking up the hill from the water hollow to celebrate dad’s birthday a couple days early, I stopped cold. I felt you in the September sky.

“Happy birthday!”

You were on the farm with us some five or six years ago for the September birthdays. Seafood, cake, and toy helicopters to fly towards the sky.

You were about half way through your battle that year.

We miss you, Skip. You were one of the easiest humans to be around.

We remember you. Yet, more than memories of what was, I’m amazed at the love and care you’ve left in your wake, lifting the loves of your life even today.

Thanks for showing us how to pluck the strawberry as we fall, for dancing even on dark days, and for squeezing the sweet out of the most bitter fruit.

Thanks for lingering in our hearts and reminding us of music, smiles, and fun. Oh! And costumes. You still burn bright in our lives.

Happy birthday.

PS: I let my daughter wax my hair blue tonight. Thought of your blue beard.

© Pennie Nichols. All Rights Reserved. 2018

I won’t miss you

I won’t miss you.

I don’t and I won’t.

My I won’t miss you secret

For years I struggled with this little secret, and concluded I was a little broken because I could never honestly say I miss you! to a friend or family member or partner when I was away. I just didn’t.

Did you really miss me?

I’m probably splitting hairs (I tend to do that), but overused, abused, misaligned words annoy me. I have similar misgivings about that four-letter word love.

I miss you! Little white lie. I wish you were here might be more accurate, but maybe not even.

I miss you! Or do I just need you here to help me with something? I can’t reach that shelf! or My computer won’t reboot!

Even if I die?

But what if I die?, you ask.

Really? It’s actually different, isn’t it? I didn’t go away, you did, and I’ll grieve. I’ll wish you were here when I do those things I once did with you. I’ll wish you were here to laugh about this or fuss about that. Maybe technically I’ll miss you, but it’s different.

I’m splitting a different hair. I’ve never gone away or been left behind and felt all sorts of something summed up in a sorrowful I miss you! I don’t. Never did.

I’m not writing this to judge those who do feel that “miss” that I’m missing. I’m writing to affirm that I’m not broken. I’m present.

Change and flow

My life events are in flux at the moment. Mom is battling Alzheimer’s and I try to be available, my partner has been in Puerto Rico for a month and I’m transitioning there. Our home, our pets, my children, my parents, my partner are all caught up in revolution, upheaval, shakeout. Mostly, uncertainty.

A friend asked me, How are you feeling about all the changes, this move . . .?

I’m not from the meh generation, but I literally said, Meh. Not in the meh, I’m so bored I don’t care way, but meh, I’m fine. I’m happy wherever I am.

My friend’s question reminded me: I don’t miss anyone.

Confession 

During my first visit to Puerto Rico, I found myself revealing my little secret to my partner, the one who just a few days earlier told me on the phone how much he missed me.

I don’t miss our dogs or the birds. I don’t even miss my children! What’s wrong with me?

You’re not broken. This is about independence and dependence. You don’t have an unhealthy dependence on other people. By the way, I didn’t say “I miss you” because . . .

I wasn’t judging you! I get it that people miss their people. I just don’t.

I was going to say that I missed you because I wanted to share this new experience with you.

I know, and I’m here now.

I’m here now.

Maybe that’s the gear that grinds in my heart when I’m away from my friends and family. I’m here now.

I don’t miss you but I look forward to seeing you.

That’s better, isn’t it? And we can both take comfort in this: I may never miss you, but I’ll always be present when we’re together.

©Pennie Nichols. All Rights Reserved. 2018

Alzheimer’s River

Last Sunday, a friend asked me if I was going blog about that morning’s service. The service, billed as “the service with too many river metaphors,” was rich with takeaway possibilities, so why not? I’m sure I can find an Alzheimer’s River in there somewhere.

Two thoughts from the sermon pushed themselves up for me, demanding attention like islands in the middle of a river. Both were spatial: beginning versus end and opposing banks.

Beginning versus end (north versus south)

At the beginning of a river (north for us), the water is fresh, mostly unpolluted. Standing in it, swimming in it, immersing yourself in its currents might be delightful. You would feel the strength of its current even though the river is still simple, young, and unmuddied.

During the southward journey, the river swells with complexities at each bend and through each community along its path, taking on more life, more volume, more pollution, and more mud.

Opposing banks (east versus west)

The waters on one side of a river can be very different from the waters on the opposing side. One side might be turbulent and fast-flowing, the other calm and easy. Your experience in a river depends greatly on where you are in it, not only the clean, calm north versus the muddied, fierce south, but also the turbulent east bank of the river (in our example) versus the calm west.

The sermon was written around social justice analogies and anecdotes, and they were perfectly delivered. I took in all of it, but that wasn’t what I took away.

Alzheimer’s River

I chewed on these two ideas a bit this week: the experience at the beginning versus the end of the river, and how you position yourself along the banks of the river as your journey down it.

Lately, most of my takeaways and metaphoric exploration relate to my mom’s journey, or at least the part of her journey that she shares with me. This sermon was no different.

I can’t take mom back to Minnesota, back to the beginning. We’re deep in the south, entering the mouth of the delta now, where we’re slowly splaying, losing bits and pieces in the dead zone as we work our way to the ocean.

I can’t stop the flow of the river, but I can help her find the less turbulent bank of it.

Last week, mom started cooking and left her pots on the stove unattended three times. At least three because we know of three burned or scorched food incidences. Mom is an energetic, multi-tasker. Even when she was in her thirties, she would get distracted and walk away from a pot on the burner. I reminded dad of the time when I was in high school, and the burned cabinets around the stove had to be repaired. It’s not all about the Alzheimer’s, but the Alzheimer’s makes the situation muddier, mightier, and not in a good way.

Calm waters

I can’t take mom to the beginning of the river, but I can help her drift towards the calmer bank. She loves to cook and we love her cooking. I believe working through tasks, like cooking a meal, helps her do vital brainwork and stay engaged in the present. I want her to keep doing as many things as she comfortably can. Although I can’t be here every day to help her cook, I can help her cook while I’m here. We can cook double and triple meals so that she can label and freeze them for later. When she wants to pull a meal together, she’ll pull out the labeled freezer packs and will feel good about serving food she cooked.

It’s not perfect, and she may pull together mismatched bags, but who cares? Mom and dad can float calmly on the west bank, enjoy a meal she prepared, and chew a little longer on the gifts that she has always given our family.

Into the ocean

I’m not ready for the ocean.

Not much was said about the very last part of the river’s journey, after it passes its most profound point in New Orleans and splays into the delta, spilling all its complex richness and all of its mighty might into the slow, vast, heaving of the ocean. I can’t control the speed of the journey of the Alzheimer’s River towards that ocean, but maybe I can help mom get a purchase in the overgrowth of the banks, pull into the calm waters, slow the journey a bit, share more memories, make more memories, and find more of the joy that this river allows.

©Copyright Pennie Nichols. All Rights Reserved. 2018.

Just Sit With Me

Sunday morning service. Can you sit with me?

What was I scared of?

Last Sunday, the service kicked off with a reading of Dr. Seuss’s What was I scared of?  (Spooky pale green pants with nobody inside ’em.) The service continued with readings from Jesus Christ Superstar songs that sometimes drifted into melody and verses from Jesus’s last days. Children’s stories, humor, songs, and big-little messages. A great service. I paused to tell the guest minister that I enjoyed it on my way out.

The service was good, but I didn’t take personally.

Yet the last words (Just sit with me) sat with me. Even as the Sunday hours ticked off, I could feel the weight of those words. Just sit with me. As I worked my way through the days of the week, my head worked backwards through the service, deconstructing the parts (love, compassion, powerlessness, fear). By Friday, the service was mine. That guest minister was speaking to me.

Keep watch with me. 

That’s all he asked. He didn’t require that they fix anything. They needn’t rescue him from the dark journey. Just sit with me. But they didn’t. They fell asleep.

I get it. Even if they had wanted to do something, what could they possibly do? I get shutting down in the face of fear and powerlessness. But he didn’t ask them to do anything. All he requested was, “Keep watch with me.”

I’ll sit with you.

I feel helpless in the face of the Alzheimer’s bull that bullies my mom.  How can I fix this? I can’t, nor can I change the course of her journey. I can, however, sit with her.

She’s afraid. I’m afraid.

What was I scared of? examines fear on many different levels. Fear of other, fear of difference, fear of change. We’re all afraid.

There is very little I can do, and I know I can’t protect her from that bull, but I can sit with her. That’s something. And perhaps in this situation, it’s everything.

©Copyright 2018 Pennie Nichols. All Rights Reserved

 

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