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

Living In Between

2019 forced me to face living in between.

In between places, in between people, in between homes, in between climates.

I read a bit about the in between from a variety of perspectives: a Jewish journal, a family dealing with cancer and chemo, a parent of a fugitive son, and more. I discovered many different in betweens and ideas to chew on: the loss of clarity in that liminal space; living in the middle versus focusing on the goal; living between knowing and not-knowing.

Here are some of the lessons I am digesting as I emerge from 2019 and living in between. They aren’t unique to living in between, but these lessons became more pronounced in that threshold.

Transitions are hard.

I spent the last five to seven days before my first trips between Baton Rouge, Puerto Rico, and the farm grieving about leaving. This was particularly disturbing for those eight-day stints because I was wasting most of my stay sad about leaving and/or anxious about going.

Lesson: Be present.

Be present has become cliché because we’re reminded to do this from many corners. If it feels watered down, it’s not any less important or vital. After I recognized what I was doing, I made a mindful effort to be present up to the very last minute, wherever I was. The transition is still hard, but I learned to spend less time transitioning and more time living where I stood.

I don’t miss.

During my first trip to Puerto Rico, I experienced an aha! moment. For all the angsting I did before leaving for San Juan,

I don’t want to leave.
Will my dogs be ok?
How much more will mom decline while I’m gone?

the aha! came one evening when Steven was watching a show in which a character was expressing I miss you so much! I realized I hadn’t thought about my dogs in days. I hadn’t missed anything or anybody back home in days. My first thought was: I’m broken! How could I not miss anyone?

I started mulling over past absences and found a disturbing truth: I never miss anyone or any place. I look forward to reunions and visits to places, but I couldn’t find that yearning in me that we associate with absence.

Lesson: Be grateful.

The discussion was tricky, but I talked about this with Steven. I had to admit to him that I never miss him. I’m grateful that he didn’t fall apart and equate love with missing/yearning in absence, thankful that he helped me come round to a deeper understanding of myself. I’m grateful for Steven.

Burdens are often self-inflicted.

I’m especially grateful for Steven for taking this deployment to Puerto Rico. We’ve had a year of adventures.

Steven’s gig in Puerto Rico meant, however, being apart anywhere from a week to six weeks, together eight to fourteen days. My I don’t miss you was pretty damn handy for this. As a couple we experienced odd moments of relearning each other and settling territory (the Puerto Rico condo was his, not mine; the farm house was mine, not his; the house in Baton Rouge was no longer either of ours). The absences were hard on Steven, my pets, and my mom.

The hard part for me? I felt pulled in opposite directions, overwhelmed at times because wherever I showed up, someone needed something from me. Some days, I felt crushed by responsibilities. I held a couple of pity parties for myself, sharing them mainly with Steven and my daughter who was keeping the fort down at our main home.

I don’t want to [insert domestic tasks] everywhere I go!
Why can’t you [insert domestic tasks]?

Fussing never feels great and it certainly wasn’t how I wanted to spend the time I had with my people. One day I was sulking about this pattern, and then, the aha! No one was demanding anything from me. I was choosing to take on tasks.

Lesson: Be mindful.

Being mindful helped me set comfortable boundaries around the domestic tedium and tasks. Once I stopped blaming people I was doing things for and owning the responsibility of my choices, I was able to navigate to a more comfortable balance. In some instances, I didn’t change what I did. Understanding that it was my choice made the task less burdensome. In other instances, I chose differently and no one was less for it.

Relationships are a gift.

For each moment I spent with/between my parents, Steven, my friends, and my children, I spent much more time alone.

In solitude, I explored the wall around my heart. It’s not unrelated to why I don’t miss people. I’ve written about this wall before. I’m clearer now on what that wall is, why it’s there, even why I may have needed it at some point in my life. With mom’s health declining and my dad’s scary heart episodes, I’m motivated to keep the wall fortified. Who wants to be vulnerable at times like these?

The wall protects me from things I fear but that protection comes at a cost. I know it’s time to bring the wall down, but awareness doesn’t make that any easier or any less frightening.

Lesson: Let love.

I know that I love, but I have never loved with abandon. Years ago, when I first began exploring this and admitted that I thought I’d never have a soul mate, Steven begged to differ. (So grateful for him.)

I’m grateful for the love I have allowed in —my family, my friends, Steven— and I’m grateful for Steven’s patience and trust as I’ve discovered my wall, fortified it from time to time, defended it. I’m taking baby a-brick-at-a-time steps, but that wall is coming down. In this liminal space, I feel anxious and afraid, but even in the uncertainty of this threshold, I sense opportunity and new beginnings. It’s a beautiful thing to peek over my wall and discover a sea of love.

Emerging from living in between (or into a new one?)

In 2019, I lived in between the suburbs, the island, and the farm, an experience that was a gift of travel adventures, self-awareness, healing, and mindfulness. The experience was also a microcosm of life because don’t we all always live in the in between?

On the largest scale, in between birth and death.
On smaller scales: in between milestones and celebrations, in between semesters and jobs, in between Mondays and Fridays, Fridays and Sundays, in between appointments and dates, in between waking and sleeping.

We are all living in between something.

As we enter a new year, my wish is that we find peace in that in between. Be present, be grateful, be mindful, and be love. Best of everything to you in 2020.

©Pennie Nichols. All Rights Reserved. 2019

Eulogies for living

I did a thing. I wrote five eulogies for living friends.

Why I speak

This eulogy thing started in 1994, the year my son was born and my grandmother died.

In April, my grandmother went down quickly and unexpectedly. For many in our family, the timing was awkward. Awkward for me because my parents were out of the country; my husband out of state; and I was alone with three young children. We were all caught off-guard. Unready.

Just like that, we were all gathered for my grandmother’s funeral. The minister, who had never met her, stumbled through some niceties (good Christian woman), maybe one other speaker read her very traditional obit: survived by all these people sitting here. I felt a strong desire to bolt to the podium : “I have a few things to say . . . ” but I sat, stewing between my daughters on the pew, holding my baby.

How did we let this happen? The service didn’t honor her memory. No one talked about her mad sewing skills. Not a peep about her chicken and dumplings or biscuits and gravy. No reference to her heart-warming smile. Not a single story about her terrifying switch bush. No one who spoke at her service knew her, ate her food, wore an outfit she had made, or lurched in a circle around her as she gripped an arm with one hand and swatted a switch with the other. I was furious, I was sad, and I walked out of that experience determined.

Feeling determined: Part 1

Less than a decade later, my grandfather died. I asked my family who would speak at his service and answered my own question: I will.

At his service, I shared tiny memories: the coins he rattled in his pockets, the rubber bands he kept handy to snap playfully at a grandchild, the VO5 hairstyle, and the long-sleeved shirts.

Nine months later, my cousin died. I spoke again, reading memories and messages from all the cousins. We remembered our youngest cousin well, with sad but warmed hearts.

Giving voice to the memories felt right, necessary, so I continued to speak at services of family, especially if no one else was delivering a personal message.

Almost nine years ago, I eulogized a friend. My friend Dela was dear, complicated, brave. She was a beautiful mess. Her brothers and some friends judged her for the mess: the piles of interests in her home, the messy relationship, the untidy career. But as I watched her battle leukemia for ten years, I grew to appreciate her messes and spoke about it at her service.

. . . there was beauty, openness, acceptance, and love in her chaos. The mess, really, was reverence for the moment. There was presence when she was present.

After the service, another friend approached me.

That was beautiful. I want you to write my eulogy when I die.

Feeling determined: Part 2

That request haunted me for several years. Losing friends is hard, sorting through who might go first is unpleasant, but the notion that haunted me most was why do we wait until the person is gone to find those beautiful memory crystals?

After gnawing on the question for a few years, I decided to write pre-eulogies (I call them preulogies) for a handful of friends and give them as birthday presents. These were unannounced and I asked each recipient not to say anything to future recipients until I made the cycle through the birthdays, closing the circle with the friend who initially requested: write my eulogy.

Writing a regular eulogy can be challenging, not only because the moment is packed with emotion and loss, but also, the eulogist struggles to capture a lifetime, a personality, the giant journey of a person in a few well-strung words. I discovered that preulogies are no less challenging.

Crystals remembered

To find the words, I dragged my mind into the grief of the friend’s absence, across the experiences we shared, and also through the myriad of ways she may have touched others as a parent, friend, child, or co-worker. I struggled to crystalize a friendship in three or four sentences.

Here are a few of the crystals I dug up in this process:

Kathy: I felt a peace wash over me every time I watched her draw in a deep breath after listening to me, lift her hands out and forward as if opening a giant instruction manual, “Here’s what you need to do . . . “

Patti: Sometimes it seemed she was drifting, but she always seemed anchored. [. . .] Wishy washy? An anchored drifter? Hardly. All along, she’s been the anchor. The glue. The strength of the bonds.

Mim: Mim is to blame for many joyful occasions. Girl Scout trips to transplant sea grasses and dance around in medieval attire. Krewe meetings, workdays, and parades. Excursions to hear live music, splash around in shallow streams, explore the flip side, dig our toes in the sand, and paddle across a lake. Latke parties, dinner parties, and girls’ gatherings . . . my house at 6!

Jackie: That act of friendship, that model of taking control of chaos, changed me. It wasn’t about the furniture. She also modeled this for me as an artist, as a scorned lover, and as an explorer. But moving the furniture drove it home for me: take what’s before you, make it yours, make your peace in it, make it work for you.

Betsy: I always felt small next to Betsy. Not in a bad way, in fact, I loved being next to her because I felt complicit, like maybe I could get a little cred when she made the room roar with laughter or when the audience joyfully rattled and shook along as she played her music.

The crystals that capture the friend as I know her are only half of the story with preulogies. I also needed to project: where would my friend go from today, how would she die, who would she be.

Crystals imagined

This might be the trickiest part for me. What if I imagine it wrong, that is, what if she has a totally different outlook for her future? Will this made-up death upset her? What if she hates me for this?

Thankfully, I’m still friends with all of them. Maybe their futures were full of the plausible joys and rewards. Kathy went up in flames in the elbow of the effigy at Burning Man. Patti passed at her beach home, draped across her favorite beach towel, head resting on a thick novel. Mim took her final slumber at a campsite by a lake, Scrappy nearby, a photo of Skip in her hand. Jackie took her last breath drifting through the bayou on her paddle board. And Betsy . . . I didn’t include the details of her death in the preulogy. Maybe because she’ll actually outlive me? Or maybe because we’re so focused on her three long overdue Grammies.

Find the words

Not everyone wants to stand in the absence of a friend to find the words. And not everyone needs to. I certainly couldn’t do this for everyone in my life because the process can be gut-wrenching. But I move forward from this experience mindful of what my family and friends mean to me and open to opportunities to share that with them.

Your friend should know why you’re drawn to her company, why you feel inclined to call and catch up, what memory of her makes you giggle. Maybe stand for a moment in these questions: What will I most miss about her? What well of sorrow will her absence leave?

Remembering Betsy, I wrote:

What I wouldn’t give to hear her tell one more Marie and Boudreaux joke. Right? I’m sure everyone has a favorite. Mine? Marie, the coffee, the oatmeal, and the hot flashes. Ha! You’ve all heard it. Your laughter, that joy that just rose up in you as you remembered her tell that joke, that’s the gift, that’s what we take with us today. That’s the joy in this well of tears.

Friendship is a gift. Take a moment while your friend is living and find that joy, share the words.

©Pennie Nichols All Rights Reserved 2019

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.

Eat the Ice Cream

If she brings it, eat the ice cream.

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

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

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

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

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

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

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

I don’t want ice cream for breakfast.

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

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

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

Thanks, Mama Nick! Hug from pillow.

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

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

I don’t know how to help.

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

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

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

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

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

For after I finish my coffee, I explain.

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

It was great.

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

Be present.

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

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

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

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

Make space.

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

Eat the ice cream your mom brings for breakfast.

It will be great!

©Copyright Pennie Nichols 2018. All Rights Reserved.

Celebrate the Lessons

How would you celebrate a milestone birthday?

My dad will celebrate a milestone birthday this week.

“Celebrate” applied loosely here.

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

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

Hurricanes and celebrations

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

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

But darn it. I want to do something special!

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

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

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

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

You don’t have any water!!

Water, Wells, and Lessons

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

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

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

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

150 feet!! Wow!

Yeah. That line goes all the way down.

Wow!

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

Celebrate the LessonsAnd that’s the pump?

Yes.

And this . . .

That’s the holding tank.

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

But where’s the well.Celebrate the Lessons

Down that hole.

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

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

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

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

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

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

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

Everything wears out eventually.

But today, we fix it.

“We” applied loosely here.

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

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

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

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

©Pennie Nichols. All Rights Reserved. 2018.

 

I won’t miss you

I won’t miss you.

I don’t and I won’t.

My I won’t miss you secret

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

Did you really miss me?

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

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

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

Even if I die?

But what if I die?, you ask.

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

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

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

Change and flow

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

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

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

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

Confession 

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

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

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

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

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

I know, and I’m here now.

I’m here now.

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

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

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

©Pennie Nichols. All Rights Reserved. 2018

Alzheimer’s River

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

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

Beginning versus end (north versus south)

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

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

Opposing banks (east versus west)

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

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

Alzheimer’s River

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

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

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

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

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

Calm waters

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

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

Into the ocean

I’m not ready for the ocean.

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

©Copyright Pennie Nichols. All Rights Reserved. 2018.

Just Sit With Me

Sunday morning service. Can you sit with me?

What was I scared of?

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

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

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

Keep watch with me. 

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

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

I’ll sit with you.

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

She’s afraid. I’m afraid.

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

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

©Copyright 2018 Pennie Nichols. All Rights Reserved