She stopped making brownies.

What have we lost?

OK, let’s take an inventory.

Sure.

Helps us know where we are.

I get it.

So, tell us.

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

Yes, but, inventory. What have we lost?

Are you kidding? Memory, of course.

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

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

OK. 1. Confidence.

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

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

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

But what did it look like.

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

You’re very lucky.

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

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

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

So, keeping up with personal belongings.

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

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

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

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

Definitely.

You’re…

I know. We’re lucky.

She stopped making brownies.

Can you remember what went next?

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

Not sure I understand.

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

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

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

She’s still driving?

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

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

We know.

What about cooking?

Measuring

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

It’s just a way of measuring.

This is the saddest conversation.

I know.

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

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

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

I understand she still mows.

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

No worries. Understandable. Back to inventory…

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

She was an athlete, I see.

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

Yes. We’re just taking inventory.

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

Sorry?

She stopped making brownies.

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

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

She stopped making brownies.

I’m so sorry.

©Pennie Nichols. All Rights Reserved. 2020

Dear Dad, I see you.

Dear Dad,

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

The message is simple:

I see you.

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

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

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

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

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

The isolation.

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

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

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

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

You answer the same questions twenty times a day.

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

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

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

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

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

I’m grateful for you.

Thank you for taking her to her neurologist this week.

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

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

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

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

I’m grateful.

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

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

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

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

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

Pennie

©Pennie Nichols. All Rights Reserved. 2020.

Bananas!

Everything is bananas right now.

I’m cautious speaking this aloud because some people are having a dreadful time. I’m not. Sounds bananas to some, I’m sure, but I’m thriving in this time out. I feel reconnected, recharged. I’m finishing projects around the house that I thought would take me years to tackle. I’m working, writing, following coaches and healers, practicing self-care and mindfulness . . . I’m never bored. I don’t hate this collective pause.

The battle of the bananas

This weekend, I chose to battle the bananas. Every year, I set out to get rid of them, but as I begin, my heart softens (the flowers are so pretty!), and I thin them instead, knowing they’ll be just as fierce next year.

Today, I cut down the dead ones, the tall ones tangled in the dead ones, alternating between swearing at the tangles and apologizing to the ones I took out by accident. Even though the execution feels powerful and fulfilling, it’s anticlimactic looking back on the finished job. The raggedy patch of banana trees probably looks a little worse than when I started. I take comfort knowing the patch will fill in nicely in about a week, and I’ve given the slain trees a last hurrah as a carpet of weed-block to help choke out that incessant Virginia creeper that creeps in from the arboretum.

Next on my to-do list today: the juniper tree. The first weekend of the quarantine, I leaned against the tree and I could feel the dead roots give.

I messed up.

About four or five years ago, mom was visiting. She was already talking about forgetting, worrying about her mind. But she was still comfortable driving an hour and a half from the farm to my house. She would make special trips just to help me out, attend a choir performance, watch a game. I’m not sure why she came that trip, but she was working in the yard.

What can I do to help you?
Do you want to work on this area? These weed trees under the fig tree are out of control.

Just that week I had already trimmed the juniper tree, fashioning a hanging basket area. I had eight to ten pots hanging from the two main branches.

What about this tree?
I already trimmed it. See? I use it for my hanging baskets.
Where’s that . . . Mom made a sawing motion.
The saw you gave me? Right here, in the green house.

She loves that little tool, and I get it. Slices right through! I used it to slay the bananas.

The juniper tree day was a weekday. After I gave her the saw, I went inside, back to work. When I came out a couple of hours later, the weed trees were all down. So was most of the juniper.

I stopped in my tracks as I came around the greenhouse. I guess she looked up just before I wiped the dismay off my face.

Uh oh. Did I mess up?

Over the last three years, she has used this phrase quite a bit: I messed up. In that moment, I felt our roles clearly turn that parent-child corner.

No, no, it’s OK. I hadn’t planned to chop it down, but . . .
Maybe it’ll grow back. There’s still . . . she motioned at the trunk area.
Yeah, maybe it’ll grow back.

Some things grow back. Some things don’t. The banana trees will grow back. The juniper didn’t.

#coronachronicles

I think I was OK with mom’s condition, knowing that I could spend good quality time with her on a regular basis, encourage her in her battle. We’re beginning our fifth week of quarantine with no clear end date, and I feel less OK about it.

I’m thriving, but I’m sad. The distance from mom and dad breaks my heart. The isolation is hard on both of them, and I know the burden and sadness of dealing with mom’s Alzheimer’s alone is exhausting for dad.

When are you coming back?
I don’t know, Mom. We have to wait until after the virus.

Post Covid-19, some things will go back to normal. Some won’t.

After the shelter-in-place is lifted, I’ll go back, start my regular visits to the farm. Normal? I know I won’t pick up where I left off with mom. But we’ll pick up where we can. We’ll miss picking dewberries together, but maybe I’ll be back in time for blueberries. I’ll miss her birthday. Probably mother’s day too.

Today was a good day. I used the saw mom gave me to thin the banana trees. Then I pulled up the juniper. I knew it wouldn’t recover. Mom won’t either. Virus or no, everyday, someone is losing grip of something. That life my dad enjoyed with mom for over 60 years, his grip on it is slipping.

Thriving and hope

From time to time, I feel a little survivor’s guilt swell up, but I swallow it down. I’ve had both a new acquaintance and a dear long-time friend tell me: “It helps to know some people are doing well. Thanks for sharing. It gives me hope.”

So I am sharing. Cautiously. I’m feeling blessed and grateful, even as I move through the grief for the distance, the grief for this nation, for this planet. My thriving is just a drop of hope into an ocean of fear, but maybe it’s just the drop someone needs.

Post virus, some things will still be bananas. Things will get better, some things might even be better. But some things won’t. We might not be able to pick up where we left off, but we’ll all pick up where we can and, hopefully, do our best with what we carry forward.

©Pennie Nichols. All Rights Reserved. 2020.

A long row to hoe

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

“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 . . .)

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

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

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

Alzheimer’s and Bumper Cars

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

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.