Tag Archives: Alzheimer’s

Running out of breath (not really a poem, but . . .)

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It’s like running out of breath, isn’t it?

As if you’re jogging too fast.

Unable to recover your breathing.

Gasping for air.

I’m doing those blocks you gave me. They’re really good.

Blocks? I think a couple of ticks.

Oh, the puzzle books!
Yes. Books not blocks. I get mixed up. They’re good for  [gasp, gasp] . . . I do them.

Like that last pushup.

Your arms struggle to push your body from the floor.

But you just can’t.

You collapse.

Yesterday when your dad and I went to the . . .

I wait a couple of ticks, then:

Where did you go?
I don’t know. [push, push, collapse] I know I wanted to tell you.
That’s okay. You’ll remember in a minute.

Sometimes you do. More and more you don’t.

You feel weary.

I feel you slipping away.

You work the puzzles, but you’re tuckered out.

It’s like you’re dozing off,
then perk up a second when you remember something you want to tell me.

But your mind is muddled with fatigue.

The words tangle in their own descenders and beaks.

We’re working on the . . . At the . . . [Deep sigh, shoulders fall.] I don’t know, I forget . . .

Sometimes we can untangle the words together.

More and more, weary of fighting to find them, you just let them go and shuffle away.

Sometimes, it’s like waking up from a great dream you want to share.

But by the time you find me, . . .

I really wanted to tell you something, but I lost it before I got here.

When you manage to string two or three sentences together,
the words scrape across the gravel that has collected in your throat . . .

Here, have some of my water.

. . . because words travel less and less across your vocal chords.

Still . . .

You amaze me.
Ever the athlete, you’re strong in this race, even as you gasp for air.
Always the coach, you’re inspirational, even as your arms fall limp and you collapse.
Still the sage, you’re wise, even when your words dissolve, silenced, on your tongue.
Forever my mom, you’re my role model, gravel-scraped chords, diminishing gaze, and all.

©Pennie Nichols. All Rights Reserved. 2020

The Cane

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Mom comes over sporting a cane today.

What’s wrong?
My knee.
The right one?
No, this one, pausing to wave the cane at the left knee. I wish they would finish what they’re doing.

She’s holding the cane in her right hand, which is correct, but she’s moving it with the right knee, which is wrong.

What they’re doing?
Yeah. You know . . .

Thinking . . . I don’t really know.

You mean, the exercises? The PT?
Yeah.

Today is Thursday, and it’s been gray, cloudy, humid, and foggy since we took a short road trip on Monday. I took her for PT on Wednesday. All my joints feel achy from this gray weather. Could that be the problem?

When you go back Friday, you need to tell them . . .
I don’t think I’m going back. My knee hurts.
But you’re going because your knee hurts. They’re supposed to help make it better.
Well, I don’t know, as she almost trips over an ant bed.
You need to tell them in case something you did there yesterday . . .
Oh, I won’t remember . . .

This is how our conversation goes from my house to hers, as she shuffles, her feet barely clearly the tired winter grass. This feels like downhill. I try to be careful with my words.

In case you don’t remember, I’ll tell dad to be sure they know your knee was hurting today.

Wasn’t it just yesterday, I leaned on her?

You need help with ____ [fill in the blank with the move, painting, cutting down the tree, taking down the pool, refinishing the cabinets, the kids, the wedding, school, a dress, the story, your buttons, your nap . . . lullaby, say goodnight . . .]?

Just yesterday.

Today she leans on the cane, on me, and most heavily on dad.

Today is downhill. I liked the hike uphill better.

Maybe tomorrow the clouds will break and, when we walk up the hill to her house, she won’t need the cane.

©Pennie Nichols. All Rights Reserved. 2020.

Two Grandmothers, One Disease, Three Stories

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Two Grandmothers

I’ve begun to ask myself why I feel more inclined to tell the story of one grandmother versus the other. Where emotion and humor are concerned, I probably have more in common with the one I’m less inclined to story about.

So why does one story draw me more than the other?

They competed for our affections. Not openly, but every now and then it would slip out.

You like her chicken-n-dumplings better than mine.
Y’all spend more time at her house.
You always go there first.

Both were Mama grandmas, but pronounced differently: Mama Nick (MAH-mah Nick) and Mama Wilson (MAW-Maw Wilson). Mama Wilson was average height —maybe a little tall for her generation— and stout; Mama Nick was short and, by her 60s, hunched.

Both were excellent cooks. One favored gardening. The other sewing and crafts.

Mom learned her domestic skills (cooking and gardening) from her mother-in-law. Arguably, this is because mom was the red-headed middle child and neither parents’ favorite, and she married fresh out of high school, living the first few months of marriage in a trailer next to her in-laws’ house. Whatever the reasons, mom’s chicken-n-dumplings are more like her mother-in-law’s than her own mom’s, and, while mom can sew if she puts her mind to it, she prefers the dirt, like her mother-in-law.

Why her?

I prefer the dirt, too. So, why do I feel more inclined to write about my maternal grandmother?

Mama Wilson wasn’t the “sweet” grandmother. She was wonderful, we loved her; but she was strung between sweet and stern, between doting and “don’t-do-that!” She had a bush just outside her back door that we, the grandchildren, called the stick bush. If she became cross with one of us, in an instant, she had reached through the back door without looking, snap!, and was swishing the switch that would blister our bottoms.

I remember hiding under one of the cupboards she used for storing cloth, needles, patterns, and thread. From there she might just scold us, the switch becoming more of an exclamation point on the reprimands.

Thankfully, those switch moments didn’t define our relationships with her. Even as children, we joked about the switch bush.

Skills

August 20, 1956, my four grandparents and my parents, at their nuptials. Mom is wearing the wedding gown Mama Wilson made for her.

What I remember more about mawmaw are her amazing skills. For fun, she made wall-hangings and things like mantel clocks, using molds, plaster, and paint. To supplement their income, she sewed dresses, vests, pants, pajamas, and wedding gowns for friends and neighbors. Of course, on-the-house garments for family.

She probably didn’t realize she had extraordinary skills and creativity. I remember the year we were in town, and she found out we would be shopping for clothing. I was at the grow-an-inch-each-month age. She looked at me, head to toe, toe to head, pulled out a bolt of cloth and a pattern from the cupboard. After spreading the cloth on the floor, she opened the pattern.

In my mind, she tossed the light tissue pattern in the air and let it fall perfectly on the cloth, but that would be an exaggeration. She smoothed the used pattern on the material, then went to the kitchen and came out with a fist full of butter knives and threw them (not exaggerating here) along the edges of the pattern before cutting the material. That afternoon, I had a McCall’s skirt, knickers, and vest that would fit me for more than a mere month.

My mom and I can sew okay, but we didn’t inherit those skills. Maybe that’s one reason I’m drawn to her story.

The oak tree roots

I think mostly, though, it’s the tree incident. I wasn’t witness but heard more than one first-hand account about her fall on the roots of the oak tree. That year, I began writing about her: a short story “Divinity” and a novel. The oak-tree story inspired the opening scene of the novel, and later, of my first screenplay. The oak tree probably marks when I first really started paying attention to what was happening to my grandmothers.

One disease

Did I mention that both of my grandmothers had Alzheimer’s?

The first signs of it began in their mid to late 60s. By 80, the disease had ravaged their minds. I would come to Louisiana for disheartening holidays, stories about the meek, sweet grandmother, now in a nursing home because she was too difficult to care for, swearing like a sailor, starting two kitchen fires, and running off two caretakers; the stern grandmother, now meek, fumbling with safety pins on her sweater where she’d lost buttons she could no longer sew back on, clinging to my grandfather’s every move, and painfully pleasant to everyone around her.

The stern-to-meek grandmother had developed a tendency to wander at night. On one of her wee-hour excursions, the roots of the old oak tree tripped her up, an incident that prompted the installation of door alarms.

That oak tree and the timing draw me to Mama Wilson’s story. Mama Nick died before I moved back to Louisiana. My visits with her were brief and heart-breaking, often spent trying to figure out where her dentures were and what happened to that new slip mom had brought her last time. I knew less about the day-to-day of her relationship with the disease. She had fallen while I was away.

The falls

I was around enough to watch some of Mama Wilson’s fall. Her fall wasn’t any less heart-breaking, but I was able to catch glimpses of the grandmother I remembered. We helped her with her safety pins, she fussed with my daughters’ hair, and we answered when she asked “Where’s Norman?” Before she slipped away, she held all three of my babies. She didn’t always realize they were her great-grandchildren, but that she held them was a blessing.

As Mama Wilson declined, mom wasn’t always patient. She watched her with dismay and started to say things like, “I hope you can be more patient than me . . . ” and “If I get like that . . . ” Then, mom got like that.

This time, I’m here for the whole fall. We’re blessed that mom’s fall started much later, in her late 70s, and that mom is an exemplary and compliant patient.

I started this essay years ago, before mom stumbled across the rough roots of Alzheimer’s. Some of the beginning of the essay is no longer accurate in the present tense. Mom cooked her last pot of chicken-n-dumplings on her own two or three years ago, she’s no longer able to put her mind to complex tasks like sewing, and her gardening is limited to weed-pulling now. She can’t hoe a row or organize the planting of it. This year, she wasn’t able to make any of the Christmas cookies on her own.

Three stories

I never finished writing about Mama Wilson’s fall before mom tripped on her own diseased roots. I haven’t even begun the forensic work to write about Mama Nick’s fall into the disease. I’m drawn to Mama Wilson’s story first because it was the first time I witnessed alertness spilling from the eyes, awareness and stories slowly draining until finally the gaze is vacant.

All three stories —Mama Wilson’s, Mama Nicks, and mom’s— inform my own as I stare down the triple-barreled Alzheimer’s rifle. All three stories challenge me. Like stubborn weeds, they break above the root and require more than the casual tug to be released.

My intention this year is to dig a bit deeper, to finish Mama Wilson’s story, explore Mama Nick’s, and continue to be part of mom’s. Turning over their stories with my words, my heart will break a little more, but I’ll learn more about these women I cherish, the disease I dread, and myself.

©Pennie Nichols. All Rights Reserved. 2020
ALZ bumper car

Alzheimer’s and Bumper Cars

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With each new day, the vacancy in her facial expression seems to widen a bit, her gate is less assured, her voice weaker. I feel like the physical “absence” mirrors the mental.

On becoming a bumper car

She’s still pretty good. But she fights hard for that. She continues to understand what’s happening to her, the Alzheimer’s. She remembers basic routines and she knows her people. The names come out like lottery tickets from a barrel, sorted mainly by gender, no longer by age, relation, or even death. Nearly every time she talks to me about her sister, who died in September, she refers to her as Pennie.

You mean your sister Norma, don’t you?
Oh yes! Norma.

I think family and friends expect less of her when they come to visit. She perks up a bit when she has company. It’s part of her fight, solving the puzzles, sorting the names, following the stories, washing dishes. And, without dwelling on it, she’s open about her battle. When she has a load of company that she wasn’t expecting, she does very well, she seems improved even. But the not expecting part is the key. If she’s not expecting something, she’s not in charge.

My dad and I have learned, not gracefully, that when there will be an event, company for the holidays, or a trip, the anticipation undoes mom. An anxious wheel spins out of control in her head and she becomes frantic with worry about getting ready because . . . she’s in charge of getting things ready.

Who’s in charge?

My mom is from stock that takes charge. We weren’t military families but there was something militant about the tasks and projects, practical approaches, no nonsense. You could count on mom, as well as her siblings and parents, to swoop in, make things easier, get things done.

That’s the wicked twist now. The thing she was known for, good at, sought out for—that gift she had—sends her into a nasty, out of control spiral. A bumper car, bouncing off the edges of her world. The bigger the upcoming occasion, the steeper the disorientation, the more severe the loss of sleep.

What are you looking for?
I don’t know.

My dad and I try to include her in as many activities as possible, especially the ones that make her feel useful. She wants to contribute. But it’s hard to know where the edges fray.

How can I help?

Mom has been refinishing a few small pieces of furniture for me. She’s always been an excellent painter, whether furniture, inside walls, exterior trim and walls. Not just good, excellent. I gave her the first small table.

I’ll come up in a bit and help you with this.

But a bit later, she had already sanded it. She didn’t remember I had also given her the paint.

What color do you want me to paint it?
Remember, I gave you the paint.
No.

But she did all the prep work without me coaching her.

More recently, she has needed more help collecting things for the task. The sander. The brushes. It’s hard to know from day to day how much help she’ll need.

Dad invited her to paint a shed he recently built. Her face lit up and she was off to collect her things. But bumper cars and being in charge.

What are you looking for?
I don’t know.

The anxiety escalated quickly, and dad wasn’t sure she would be able to handle the task at all. As he collected the brushes and trays, and removed the stress of being in charge, she was able to move comfortably into the task. Her work was excellent.

She fights for it. She wants to be in charge, but she also she doesn’t want to be a burden. Who knew the two impulses would collide? Bumper car.

Knowing her limits

Dad and I want mom to feel at ease, to find purpose in her day, and we’re learning what her shifting limits are. We’re learning how to be present for her.

Mom comes down to my house three or four times a week to see what she can do for me. She likes to wash my dishes, take out the compost. When she arrives, I’ll look out and see her bent over a walkway pulling up weeds. That’s useful. Then, as she walks to the door, I watch her move. Sometimes I know by her steps or her gaze: bumper car.

I should know where this goes but . . .
Here, let me help. I’ll put the clean dishes away for you so you can wash the dirty ones.  

©Pennie Nichols 2019 All Rights Reserved
Just sit here and love me

Life Lessons: Mom and a Song

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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.

Eat the Ice Cream

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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.
Alzheimer's River

Alzheimer’s River

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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.
Sit with me

Just Sit With Me

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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

Alzheimer’s Bull

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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
It's not why I come. It's why I look up.

Uncertain Journey

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A couple of months ago, I made a decision. I didn’t have time to do what was involved, but part of the decision was to make the time. I made the time to begin an uncertain journey.

Monthly One-Week Visits

Once a month, for one week, I go to the “farm,” my folks’ place. They live a mere ninety miles away, but due to my long hours and endless projects, months can slip away between visits.

Earlier this year, mom was diagnosed with early stages of Alzheimer’s. Months between visits suddenly seemed unacceptable, so I decided to make a change.

Once a month, I throw a bag of clothes and my computer in the car, and the dogs and I head to the farm. I set up a docking station in the house we rent from my parents and spend a week in our little country home in the water hollow, just down the field from my parents’ home.

I’m not sharing this as a brag. I don’t have a clue what I am doing. In fact, I felt a little selfish at first. Even though I’m working, the visits are a nice break. I don’t have the worries and distractions that pressure me when I’m at home (in the city). I don’t have to feed or coddle anyone. In fact, I get coddled! Mom shows up with clementines and cashews. Dinnertime? I just show up. It’s already prepared.

Am I doing this for me or am I doing it for my parents? Can I make a difference given my ridiculous work hours?through the field

I’ll answer the second question first.

Yes. Absolutely yes.

While I spend most of the eighteen hours I’m awake sitting in front of my computer, I can take a five-minute walk and I’m in mom’s kitchen. I walk up the field three to four times a day, sometimes to join my parents for a meal, sometimes to help mom do something, and sometimes just to visit. But can I make a difference? Just as doubt was setting in, I realized that the insight I gain during the visits and meals are helping me identify ways to help. This is a new journey for us, and although it’s not one I’m thrilled about, I’m blessed and joyful that I am able to be on board for it.

Regarding the first question: “Am I doing this for me or am I doing it for my parents?”

Both. Why shouldn’t it be both?

For me: The visits are self-indulgent. They take me out of my work bubble. I may not work less while I’m there, but I move more, look up more, breathe better air. I have a break from the regular pressures of home, and I get a little spoiled.

For my parents: This is an uncertain journey. The uncertainty is unsettling. I may not know how to help, but I know it helps to talk, share ideas we’ve found, and be present for each other.why I look up

The Magic of Making Time

Remember I said I didn’t have time to do this, but decided to make time? It’s true.

My garden had gone to weeds, the walls in one room need to be torn out and replaced, all of the windows in my house need to be replaced, the shed needs to come down, two ponds need to be dug up and moved . . . The grass and weeds keep growing, the dust and webs keep collecting, the dogs keep shedding, and I can’t keep up because I work ten to fifteen hours a day. I didn’t have time.

What happened when I made time? The list of to-dos didn’t magically diminish, but, magically, I have more energy and vision for tackling that list. I’ll continue to make the time for this uncertain journey, for myself and for my parents.

Enjoy the photos I took on my walks between the water hollow and the main house (it’s not why I go but it’s why I look up when I do).

©Copyright Pennie Nichols. All Rights Reserved, 2017.