Tag Archives: Alzheimer’s

A long row to hoe

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We’re two weeks in: shelter in place. I’m not sure how much longer we’ll do this, but I think we have a long row to hoe.

Collective crisis

I see the frantic posts as friends and family settle in to work from home, not work at all, isolate with children and parents, or isolate all alone.

I read helpful posts about how to cope, how to disinfect, reminders for self-care, poetry to lift us up, naming this grief.

But honestly, I don’t feel most of it.

I do feel something because this is a collective anxiety, a collective grief and confusion. For the most part, however, the coronavirus has not changed my life.

  • I’ve shopped in bulk for thirty years so I didn’t need to make a special run for groceries or toilet paper.
  • I’ve worked from home for twenty-four years, so 1) I still have work, and 2) my workspace has not changed.
  • I’ve been stocked up on supplies for all the little projects I want to tackle, and when I don’t have something, Amazon Prime delivers.

Yet, my life is different. Not necessarily in bad ways. I’m more mindful. Mindful of my movements through public spaces, of going into public spaces, of the surfaces and clothing I touch and use, of where and how I spend my time. I’m alone less, with my partner working from home now. I stay home more. These aren’t bad things.

Staying home means staying away

The last part, staying home more, is probably hardest for me. I usually spend half my time on the farm, close to my folks, so I can help mom and dad as needed. Now I can’t risk giving this invisible enemy a ride to the farm. So I won’t go back for a while.

Last week, I made a grocery haul to the farm to make sure mom and dad have enough.

I don’t stay long.

Mom asks questions and seems to understand, but then asks again.

When are you coming back?
I’m not sure. The virus, remember? But Audrey and Jason are staying here. They’ll be safe to spend time with you soon.
What are you going to do?
I’ll stay in Baton Rouge with Steven. Work.
When are you coming back here?

Back to the garden

Before I leave, I go with mom to check on the garden and greenhouse. I remind her gently, Don’t get too close to me.

We check on the plants, decide to transplant the zucchini. I didn’t come prepared, so I hoe a new row for the zucchini in flip flops and a sundress. We water. We talk. Mom asks questions. I hold my hands up: No closer!

I planted the garden with mom hoping to give her manageable tasks that help occupy her day, help her feel useful. But some days, she tells dad How am I going to do this!? Some days it’s a little much. Especially now. The virus and isolation.

When I’m with her to help, she enjoys gardening. Tugging at the hose just so, making sure it’s straight so it won’t scrape across the plants in the neighboring row. Pulling up the weeds and rogue grasses. Muscle memory and meditation.

A long row to hoe

I watch her knowing I may not be back for weeks, months even.

When are you coming back to do something with those tomatoes?
I don’t know, but I’ll make sure Audrey helps you.

My life hasn’t changed much because of the virus. I still spend about sixty hours a week in front of my two computer screens, working, writing, paying bills. I still cook most of my meals, go to the garage for paper towels when I use the last towel from the roll in the kitchen, plant seeds in my garden, pull weeds, move rocks, dig holes. My life is pretty much the same, except I wear gloves to the grocery and disinfect the containers when I come home.

Mom’s isn’t the same. She’s more isolated than ever. Little doors are closing in her brain. No church. No grocery runs. No PT.

When are you coming back?
We have a long row to hoe, Mom. But we’ll be okay. And I’ll meet you on the other side of this. I promise.

©Pennie Nichols. All Rights Reserved. 2020.

Working with you

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“I like working with you, ” she said casually as I walked away.

Why did this make make me tear up?

We had spent a few minutes, about 60, working on the greenhouse, repotting seedlings, watering.

“I like working with you.”

But you taught me all this we do.

I tear up because she doesn’t remember.

“I like working with you.”

She’s miles into the ALZ, but when I told her I wanted to take my flailing little seedlings to the greenhouse, she put on her jacket and followed me. She knew what needed to be done.

As I shook the delicate roots of the seedlings apart and repotted them into pierced Dixie cups, she collected rat-chewed bags, pulled down dried vines, then swept away the cobwebs. She prepped the greenhouse.

“I like working with you.”

She acts amazed when I pull off moves much less complex than the ones I watched her perform over the years. I tear up because she doesn’t remember that she taught me how.

“I like working with you.”

Mom, I love working with you. You’ve trained me well.

©Pennie Nichols. All Rights Reserved. 2020
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