Caregiver’s Note to Self: You’re Enough

I began documenting this uncertain journey four years ago next month. My words are often reminders, a big fat note to self, because I mostly write for myself. I also write to honor my parents, to lift them on the journey. My hope is to connect with other caregivers and empathetic readers through my words. To lift them.

Note to self: This is damn difficult.

A few days ago, a friend who was also an Alzheimer’s caregiver for her mom, wrote to me:

Been reading your blogs —tough times. Brings back memories, it can be so damn difficult & exhausting. Your mom is so lucky to have you, makes me wish I would have done more for my mom. Can’t dwell on that.

The makes me wish… sentence made me sad. I never want my journey notes to inspire regrets. It’s the opposite of why I write about anything. Down the road, I may have a similar struggle with regrets, so this is me writing to my friend and a note to myself: We do our best.

Another friend who is a facilitator for the Caregivers of Alzheimer’s and Dementia Patients Support Group offered this to one of the group members who was struggling with the I-wish-I-could’ve/would’ve thought pattern:

You did the best you could with the tools you had at the moment.

Note to self: Do your best with what you have.

My friend’s words have stayed with me as I move through this journey with my parents. I offer them back to my dad when he struggles with mom, to myself when I’m not happy with my choices. I offer them here, now, to any other caregiver, past or present.

This journey plays out differently for every family because the range in behavior and condition of Alzheimer’s patients is dramatic. I have two friends whose moms became violent. Of course their families needed memory care. One of my grandmothers ran all of the sitters off and nearly burned her house down more than once. Of course my uncle thought she’d be safer in a nursing home. My other grandmother, the one with a switch bush just outside her back door for spanking her grandchildren, became docile, a lost puppy following and calling after the only shred of her life that hadn’t faded: Norman, my grandfather.

My grandfather patiently cared for her until “she passed out.” He kept her home because he could. Patience may have been his nature, but I imagine he never thought of it as a choice. He was just doing the best he could.

Note to self: I see you.

My dad once told me that he told mom, “I’m no Norman.” I’m not sure the exact context, but it involved Alzheimer’s. Mom’s been watching this bull snort at her for at least six years. Dad knew my grandfather’s model wouldn’t work for him.

You don’t have to be a Norman, Dad!

Dad isn’t Norman and he’s doing his best. I know because I see him.

And my friend who wrote to me last week? I know she did her best. She kept a sense of humor I envy, and she did some beautiful things for her mom and dad that I wish I could do.

I see you! 

The things I do for my mom won’t work for other caregivers. The choices other caregivers make won’t work for my family. Our journeys are different and caregivers can’t all respond in the same way. We don’t need to be the same. What we need is to be seen. This is a damn difficult journey.

Note to self: Pity parties and guilting don’t work.

I mostly write about the best moments, that moment we managed to crawl out of a hole that swallowed us or that moment we found a joyful activity. The simple moments that offer a little hope and light.

I don’t always walk in the light.

Restless my mom kept asking where dad was. I had sent him to Sunday evening church without her so I could spend a little time with mom before I left for two weeks.

“He was supposed to take me!”

“I asked dad to let you stay with me because I’m leaving tonight. You said you wanted to stay with me. Don’t you?”

She was agitated. “If people would just do what they say!”

I’m not sure if I was truly sad or if I thought I could guilt her into relaxing. “I’m sad. I thought you’d want to spend the evening with me.”

When I didn’t get far the first time, I used the same tactic a second. Maybe a third. Devolving the conversation.

“I guess I’m the bad one now,” she said, staring hard into the other room, away from me.

Note to self: The ALZ bubble is always on the verge of bursting.

The words that follow might sound like in-my-defense statements (and it’s not untrue), but I write them as notes to self for caregivers.

Outside of the ALZ bubble it can be easy to ideate the perfect things you’ll do and the exemplary demeanor you’ll exhibit (or would have done and would have exhibited) through the difficult moments.

I have the luxury of removing myself two weeks at a time when I go home. Dad doesn’t. Many caregivers don’t. They’re in the ALZ bubble 24-7.

The ALZ bubble is pressurized, about to pop with hard moments. Sure you have tools —an excellent box of tools— but under pressure you struggle to locate them. Not to mention that you’re stuck in that pressurized bubble with your own baggage and, let’s face it, your own garbage.

It makes me sad that you don’t want to be with me.

What a load of garbage! What was I thinking? I clearly wasn’t.

Note to self: There is no pause button.

Life doesn’t pause for the miracle of patience. You have to find patience in spite of the life tasks that pull and weigh on you, and some days the patience is not there.

I needed to pack, take out the garbage, the compost, close the blinds, pack the computer, prepare the house for a 2-week absence. Patience wasn’t in my tool box.

Your scramble for tools is exacerbated by the prickly gasses of emotions that fill the ALZ bubble: sadness, disappointment, fear, impatience, anger —oh the anger!—, frustration, and grief. Pressurized, tangled, hot, urgent. It’s a miracle you can breathe in there, let alone rise to a task.

Dad recently reported a new development. He didn’t say so, but I’m sure the new development injected the gas of embarrassment into his ALZ bubble. Sitting in their pew at church, he saw something on mom’s neck.

“Oh my, is that toothpaste on your neck? Here, let me wipe it off. Why did you put… ? Never mind.”

We can’t side-step or mitigate all the developments. We can’t shake off the emotional toll and we have precious little recovery time because it’s all we can do to manage this wagon, barreling down the mountain with no brakes. There is no pause button, so we strategize, make promises to ourselves, face the next day.

To help mom with where to put what, we’ll simplify and organize toiletries, outfits in the closet, and underwear in the drawers. That’s the best we can do.

Note to self: Make the best of the journey, it ends in disaster.

This journey is hard. You care for someone you love knowing all the while you’ll both lose. Embrace the grace you’re given in any moment.

If you said something that made her smile, congratulate yourself. If you were able to sit still with him in the afternoon even though the house needed tending, give yourself credit. By the same token, give yourself a break for those moments when you left his side impatiently and for that thing you said that made her agitation escalate.

The balance is hard, the journey unkind.

For me, the journey is all I have left with mom. She’s going to lose this battle. I’m losing her bit by bit. Dad’s losing his love. I know where we’re headed and I don’t like it. The best I can do is make the best I can of the journey.

Note to self: This is so damn difficult. I’ll do the best I can today. And that’s enough.

If you’re on an Alzheimer’s journey, remember to take care of yourself along the way, give yourself a break, accept the help of others. If you’re not but you know someone who is, see them and let them know you see them.

©Pennie Nichols. All Rights Reserved. 2021.

What are we going to do about this mess?

The call

“What are we going to do about this mess?”

I know it’s her when I see the caller ID. She used to know all the numbers by heart, but her mind is a mess now. She keeps my number by the kitchen phone.

“What mess?” I ask.

Honest question.

  • Did you drop a plate?
  • Lose your purse?
  • Are you trying to find dad?
  • Is the sitter annoying you, sticking too close to your every move?
  • Or is it the big mess? The mess in your head?

We’re in a mess.

Words come with great effort, and she’s tired, she can’t always explain. But sometimes, “I just sit in the chair all dad-blamed day!”

What are we going to do? She won’t like any of the answers.

I’m sad. But I don’t want the sadness or the mess to define me, so I keep looking for the answer of the moment.

The storm before the storm

Some days her frustration defines her, a hovering Pig-Pen cloud that, like the sitter, sticks too close.

A couple of weeks ago, I could tell she was undone by the pre-hurricane commotion. Unfamiliar faces of evacuees, organizing groceries, preparing food ahead of the expected outage.

“What are we doing?”

“We’re getting ready for a hurricane.”

It was time for me to leave, but I couldn’t leave her alone like this, in a cloud of confusion and frustration, her jaw set hard, muscles stiff. She was angry.

“What’s wrong?”

“I’m just this, this old woman!”

She had washed my dishes, helped me in the flower beds, with some laundry, but in all the commotion, she didn’t remember doing things. She felt idle in a sea of busy people.

“Yeah, we’re both old, Mom,” I tried to inject some light into the moment.

“No!” She pounded her fist on the counter. Angry. “They don’t care about me! I’m just an old woman!”

The hurricane evacuees greeted her, gave her hugs, had small conversations, but the commotion was too much. Everyone was busy. Chit chat and hug, then scurry along to prepare hurricane food, settle pets, organize the fridge. She was just an old woman.

“They care,” I protested.

It’s never a good idea to protest.

I pulled her in for a long hug. She stayed stiff as a board. It was too much.

We have to do something.

Dad would call me a few days later.

“We have to do something about this mess!”

“What mess?” Again, honest question.

“Well, if you don’t know, there’s no point in me telling you.”

Oh, the big mess.

It’s a big mess. Most days it defines us. I don’t know what to say, what to do.

What are we going to do about it? All of the answers are unsatisfactory. We have to do something, but what?

Grilled cheese

I take me arms away from mom. Her fist is still clenched on the counter.

Lunch! I forgot about lunch. In all the commotion, I didn’t think to make lunch.

“Can I make you a sandwich?”

She stared dismissively into the back fields. A sandwich might not lure her off the ledge, but it couldn’t hurt.

“What are you doing?” She heard me pull a pan from the cabinet.

“Making you a grilled cheese. It’s already three and you haven’t had lunch. Will you forgive me?”

Still stiff, she walked around and picked up the spatula to move the butter. Something to do…

I let go of my urge to get on the highway. The storm wouldn’t be here for at least 24 hours.

“Rectangles or triangles?”

“Triangle,” she motioned with her hand. Sometimes she knows what she wants.

We sat.

“Where’s your dad?”

“He’s getting the generator ready for the storm.”

“Storm?”

“Yes, there’s going to be a hurricane.”

“Oh no,” she washes the cheese and bread with her water. “This is a mess.”

“It is. But we’ll be okay. You won’t be alone.”

©Pennie Nichols. All Rights Reserved. 2021.

 

 

This is my house!

This is my house! but she’s walking away.

I popped in for a short visit last Saturday.

“How you doin’?” I asked mom.

Without looking at me, she answered, “It’s bad.”

“Your… ?” I pointed at my head. She looked at me and nodded.

It’s getting bad.

A few weeks ago, I received reports of drama in the house.

“This is my house!” mom told the sitter, and the sitter’s tender efforts to help mom manage the house were thwarted.

Was she sweeping the kitchen? Maybe starting lunch? Clearing the dining room?

This is my house!

The dining room furniture is a set that mom and dad bought the year we lived in San José, before we went to Spain for three. The great big before, when mom could buy furniture in stores in California that she wouldn’t use until she moved to Spain, into a house she had yet to see.

The dining room set has been with mom and dad for fifty three years and counting. The set is modest, but solid. Real wood. Well-traveled, from California to Spain, then to Alabama, from Alabama to Tennessee, then into storage in Mississippi, and finally to Louisiana, where it took its place in the center of the home mom helped dad build.

They don’t make them like this anymore.

After the chairs came out of storage, mom reupholstered the cushions, repaired the wicker backs. She painted the dining room where they currently stand at attention around the table, ready for the next family gathering. Mom painted all the rooms of the house, not just this house, many rooms of many houses. Mom is the best at painting, the one we count on to spackle, paint perfect lines around trim, even coats… She is the expert…

Mom is… She was the best painter.

I struggle with verb tense. She isn’t as she was.

This is my house, she reminds the sitter. She reminds us.

It still is, mom.

I struggle with seeing her skills in past tense. She not only painted her houses, she helped dad with many stages of the build. She wove wires and PVC through frames for light and water. How many of us can say that about the houses we claim?

And she was extra. When they poured walkways, she collected leftover concrete in plastic planters from the nursery to make hundreds of stepping stones that we still use, that our friends use in their yards. People I don’t know walk on her stepping stones at my church.

It’s hard to let go of the person she has been.

Exasperation

I visited from college one year when mom and dad were building their home in Tennessee.

“I’m not learning anything new!” she told me. “The more you know how to do, the more you have to do.”

I was an eager college student, and her words confused me, their wisdom twisted around the exasperation of a 40-something weary woman.

In her early 30s, mom was in college, attending school as she raised children. She interrupted my homework one afternoon to tell me, “I wish we didn’t need sleep! I could get so much more done if I didn’t have to sleep.” Exasperation.

She’s exasperated now.

This is my house!

She won’t say it but I can hear the exclamatory dammit at the end.

Mom is not and never was a quitter. She kept learning new things beyond her 40s. After she was done with building her own home for the third time, she read Mother Earth News for gardening hacks, Southern Living for Christmas cookie recipes, Reader’s Digest for something new and different. Stacks of magazines on all the end tables, night stands, and in the kitchen and bathrooms.

I wish I had paid more attention. Most of what she learned, knew, did, and was, is no longer.

I needed her last year when I tried to make buckeyes for my brother and son. She was right there with me, but she wasn’t. I made a tub of buckeye badness that no one could eat.

Walking away

This week dad called to let me know she walked out. He came out of the bathroom to go to bed, and she was gone.

When he didn’t find her in the kitchen or living room, he looked for her outside. He looked in the back. Not there, and thank god! not in the pool. Then to the front where, through the darkness, he spotted her walking down the long driveway towards the highway.

She’s been walking away from us for a long time. It’s hard. It’s scary. Some days it’s exasperating.

This is our present tense, where she is now: she is walking away.

Even knowing she isn’t what she was, we cling to the pieces. We’re trying to hold the pieces together, sitters to keep her safe and keep her company, housemaid to help her keep a tidy house.

This is my house!

It’s hard.

I can’t imagine the memories and questions that swirl in dad’s head as he meets mom where she is day after day, less and less of her there. I struggle with deep questions, but most of the tangle in my head is about the small things, moments I didn’t hold well, skills I didn’t master.

How do I make your buckeyes? When will I have time to revive your garden?

I miss mom. I want her back.

I don’t want to learn anything new!

What can we do? She’s tired.

Sit with me

“It’s bad,” she was looking at the floor as she told me. I wondered what images were going through her mind, but I knew what she meant.

For that fragile moment, she stood on top of the disease, talking about it, not from beneath it. I knew if I dug in with questions, she’d slip back under.

The exasperation was mutual.

She’s walking away from all that was hers, her home, her husband, her children, and grandchildren. Yet in these moments, she clings to what’s left.

I wish I could do something to fix this for her. I reached for her hand, “I’m so sorry,” and we sat for a spell.

They don’t make them like this anymore.

©Pennie Nichols. All Rights Reserved. 2021

My patio moment

The patio moment didn’t last long. I’m grateful. Those sixty to two hundred seconds were petrifying.

Petrification

Part of me wants to tuck this darkness down, hide it from worried eyes, prying minds. When I told Steven about it last night, I finished with, “Don’t tell anyone.”

This moment right here, the telling someone, must be a cousin to the moment an addict experiences, speaking that dark truth, exposing the disease. The telling is also petrifying.

Scientists blame calcification.

Emotionally, it’s hard, a petrification.

Patios

I have many soft emotions around patios, my patio, where I’ve created a sacred space for writing morning pages, meditating, reading; my friend’s patio, where we’ve made space for our laughter, joy, dreams, tears, and anger.

My friend’s patio is also her sacred space. Although my patio isn’t as nice or big as hers, she often commented when we would sit on my patio about how much she wished her patio were covered like mine. This year, she installed a roof over her patio so she can enjoy it rain or shine.  I was standing in her yard, admiring it, remembering how she used to express her longing for this roof whenever we sat under my patio cover.

My patio.

My patio?

I closed my eyes, turned away from my friend and Steven, who were untangling solar lights.

My patio! What does my patio look like?

I know it has a roof, a covering.

My patio.

I could not conjure the image of my patio.

I walked away, eyes squeezed tight now, connect the dots connect the dots.

My house.

I couldn’t find it. Not yet.

I just need one small dot and then one more.

I’m not sure I was breathing.

My first dot was the dead DeLorean parked in our driveway.

Dot, dot, dot…

Walking through the front door, the TV room, the dining room.

My patio!

Is this the beginning?

Maybe this was just an empathetic moment, I’m so close to mom’s battle.

But what if it’s the first of many moments, when the dots are harder and harder to connect?

I sat under my friend’s patio, doubling over in the chair.

I looked up the stages of Alzheimer’s. This would be a pre-stage 1. Stage .25?

One of the beautiful gifts mom has given us on her journey is her openness. She didn’t tuck her darkness down, hiding it. As I’ve watched her battle this bull, that openness is one of her weapons against it.

I see you!

Every time she can respond to the bull’s attacks with that recognition, that I see you, she smites it. Just a bit.

Did I get a first glimpse of that bull yesterday, when I couldn’t see my own patio?

I pray it’s an anomaly, a mind crowded with too many to-dos, a little stress, and relational tension.

But what if it’s the first spec of calcification on my hippocampus?

Even as I told Steven don’t tell anyone, I thought of mom. I have this problem. Her sometimes uncomfortable frankness about the disease that has slowly sucked the life out of her.

Since when? When did it start for her?

Fight in the Light

We’ll never know. Maybe she was also in her 60s when it started. The disease showed up for my grandmothers when they were in their 60s.

I hope this is my one and only patio moment, but what if it’s not? Taking the secrets of a disease to the grave serves no one, not even the victim.

There is a shared despair around Alzheimer’s. My dad feels the despair as he watches the beast take mom, one bite at a time. I feel my own despair when I visit them. Over the last four years, I’ve touched the edges of the despair mom must feel, but in that patio moment, I felt it. Her despair as she scrambles for the dots to get back home, as I squeezed my eyes to find my patio.

It’s petrifying to imagine what could be happening under my skull, but calcification doesn’t pause in the darkness. This might simply be a brain fart, the passing of a mental stone, but if this is the beginning of a battle, I’ll stand in the sun and fight it in the light.

May 29, 2021, 5:30 pm. I could not remember my patio.

©Pennie Nichols. All Rights Reserved. 2021

Losing is hard

I  want to be a hero, but today isn’t the day. Today is the day I bend into the sob and ask myself, “What is this?”

It’s a rhetorical question. I know what “this” is. But I double over anyway.

Losing is hard.

I spend two weeks at the suburban (capital city) home with my honey, then two at the water hollow (farm) home close to my parents. The first two days at the water hollow are the hardest.

She’s still swimming to the surface, bubbling “I can’t remember the words” because she’s a fighter. Even as we’re giving up, she hasn’t. She can’t hide what she’s lost. My throat catches as I fill in the blanks for her with the words that disappeared since… two weeks ago.

This sucks.

Sometimes I power through the two weeks without a wail. Not this time.

I would bargain, but with whom? For what? There are no more drugs. No heroes in the corner waiting to come forward with a measure of relief, certainly not a cure. Certainly not at her age.

At the end of a sitter’s day, I fetch mom. We walk from their house down to mine. I hold her hand because this incredible athlete’s steps are unsteady. Sometimes I hold her back as her gate careens her forward or off to one side.

I can’t… She flails her free hand for the word… they just go. I fill in the they blank —”legs”—, hold her hand tight, focusing on the sweetness of holding hands instead of the bitterness of an athlete’s loss.

Stop!

Mom’s a fierce athlete. She didn’t always win but she never lost without a fight. I wish her grandchildren knew the tales of her prowess. I can’t pretend to know all the stories, but I witnessed a few, like these.

  • Mom played on a basketball team when we lived in Spain. The year after they took the national championship, the league established a rule: no Americans. I think it was a more general “no foreigners” rule, but she was the reason for the rule.
  • Mom returned to college in her 30s after we moved back to the US. She played on all the teams. It was her senior year, basketball season. She was the older woman in a league of 20-somethings. Mom stole the ball. She was wickedly good at dribbling the ball right out of your hand. This woman from the opposing team wasn’t having it. She grabbed mom by the arm and thrust her down. Mom was out for the rest of her senior year, arm in a cast. I remember doctor visits and bone spurs. But she was steel, cheering her team from the bench at every game she couldn’t play.

Can’t we stop? Stop this careening, this fall? Where are the referees to call this rough game? It’s unfair to grab a mom by the arm and snap her like that.

Mom still shows up, even if she’s benched. She fights hard because she doesn’t like to lose. She wags her tongue, “I don’t know what I’m saying,” as she fights for the words, as we fill in the blanks.

I listen to and read stories about other Alzheimer’s victims. They have common threads, but the patterns are singular. Mom’s story is uniquely hers.

I wondered, Why is she still telling us “I can’t find the word”? but I get it now. This is how she loses: not without a fight. Even if she can’t win all the points, she’s holding this damned disease back with every muscle she can until they call the game.

It’s hard for all of us.

Some days, after my heart drops to the floor, and I collapse into a groan of sadness, I kick my heart to the corner. What’s wrong with you!?

Sure, it’s shocking to come back every two weeks to mentally assess what’s gone, but Dad is witness to every drop that spills, every piece that falls away, waking next to her in the bedroom, watching her struggle to dress in the bathroom, helping her prepare dinner in the kitchen because she no longer can. He watches this show live. He sees step-by-step the dismantling of her beautiful energy.

I pick my heart up from the corner, coddle it a bit. This is stressful, but we’ll get through it.

Losing is hard.

I’m not the first to ask myself, Would it be harder if I lost her all at once? Boom! Heart attack. Snake bite. Car accident.

But who am I to compare?

Losing is hard no matter what.

Sudden is tangled in regrets and things unsaid. Gradual is woven with threads of impatience and anger.

And how can we compare experiences?

Losing is hard whether you’re the one who slept next to her for sixty plus years or whether you’re the one who looked up to her for nearly as many.

I kicked my heart to the corner today because I’m not always easy with this. I fall short of heroic, but I can hold space for forgiveness.

Forgiveness for myself, as I breathe through the grieving sob that numbs my thighs.

And for my dad? For my dad, space as he rises and collapses day-after-day next to this disease, empathy when he kicks his own heart to the corner, grace when he needs time to recover energy for the next steps.

She’s not going down without a fight.

We’ll come to a day when all of her words are blocked by the gravel in her throat and the fog in her mind. Maybe I’ll need a moment to curl into my thighs and sob, maybe I’ll take it. But on that day, I want to be her hero. I want to show up like she did in her cast for her teammates. I want to sit next to her on the patio, hold her hand in the long stretch of silence between the lawn chairs, even if we can’t both be in the game. I’ll cheer her on. I’ll point at the bats for her as they fly into the dusk.

Losing is hard.

Losing is a lot to live through. But who she was and what she will always be in my heart are more.

©Pennie Nichols. All Rights Reserved. 2021

 

 

House of Memory Shards

“I had this friend,” mom told me on our drive today.

My ears perked up, and I wished I had brought along my recorder or at least learned the strokes to use my phone as a recorder.

Memory shards surface.

I smiled at her and focused hard. Sometimes, often on drives, she tells me stories from her childhood and youth. A couple of Novembers ago, we drove out to a Christmas-tree farm, close to where she grew up.

We had an old bike with a no chain,” that story began.

She talked about how they would walk the chainless bike up the hill on what I have to presume was a dirt road, then take turns flying down the hill on the bike.

I’m fairly certain the bike was also without brakes.

They were a single-car family. I’m not sure they had a phone yet. Maybe my grandfather was at work with the car, or maybe my grandmother had the car shopping. I don’t remember what mom told me (she doesn’t either), but there was no car. The bike had no brakes. And my wiry, red-headed mom wiped out flying down the hill.

Her brother and maybe some friends ran down the road to fetch someone to help, someone with a car or a phone. Even though I didn’t grow up with cellphones and I handled many things without one well into my forties, I can no longer wrap my head around managing a crisis, big or small, with no cellphone and no car.

“Somebody told my dad…”

She doesn’t remember how he found out, but he showed up at the hospital where they had taken her.

Was it the excitement that sheltered that memory from the Alzheimer’s storm? Why do some memories —old and new— unexpectedly stick while others are swept away?

The memory of a friend

Today, I thought I was going to get another childhood story. We were driving along rural highways on our way to visit my cousin, and while these roads don’t run close to Pine where mom grew up, they look similar.

Mom has rarely spoken about friends. I was excited.

“My friend, her man is sick. He can’t do anything. She does everything for him, makes all the food, feeds him…”

We turn into my cousin’s driveway.

“Oh, this is it! I can’t believe I get to see her again so soon. She has a such a big, big…”

“Heart?” I try to fill in the blank. She has more and more of these blanks.

“Yes! She’s a wonderful person. He doesn’t know how lucky he is to have her.”

Which memory is it?

This wasn’t a story about mom’s friend.

“We’re going to see your sister’s daughter,” I had explained several times during the thirty-minute drive, repeating my cousin’s and aunt’s names.

“Oh, I guess I’ll remember her when we get there,” she said. She usually does.

As we pulled up, I explained where we were. When my cousin came out, she seemed to remember her, but following the visit, I know it was in spurts, incomplete.

The memory shards

Half hour into our visit, my uncle joined us. He has been widowed for a year and a half now.

Mom had recently talked about him by name. “I haven’t seen him in a long time. But he seems to be doing well.”

I think my uncle is strongly tethered to her memory in that house of shattering mirrors. Losing her younger sister has compartmentalized him in the best way: the memory of him is protected. Or maybe the fear of widowing or becoming widowed keeps him clear.

Regardless, mom knew who he was today. She was happy to see him and became more engaged while he was there. We had a nice visit.

On the way home, mom said, I’m so lucky I got to see her two times in a row,” referring to my cousin. Then she added, “I didn’t remember they were brother and sister.”

A hero and her bloody memory shards

I cried inside today, but I didn’t drop tears.

Here’s the thing. I was amazed. She’s still fighting, like that hero from a familiar story who you know will lose the battle. It’s close to the end. She’s so bloody she’s hardly recognizable but the hero will battle to the bloody end.

I saw through the cracks in the mirror today, had a glimpse of mom’s battle. Mom hasn’t stopped fighting this damned disease, wrangling that stubborn bull. She battles to grip the shards she has left, even when they bloody her fists. She fights to put together the pieces of a story, the characters in her stories, and the bloody pool of memory shards at her feet.

“They’re not brother and sister. That’s her dad, Mom. She’s your sister’s daughter,” I corrected her. I shouldn’t have.

We drove in silence much of the ride home. I’m sure we were both thinking about the visit, my cousin, my aunt who died, my uncle who survived her, and mom’s struggle to remember.

Just before we turned in, mom said, “I’m so lucky to see her again. I had forgotten they’re mother and daughter.”

I’m still sorting this out.

©Pennie Nichols. All Rights Reserved. 2021.

Persimmon Lessons

Sometimes we learn lessons from teachers. Sometimes we learn persimmon lessons.persimmon tree

The fruits we bear

The persimmon tree is a slight thing. Most years, the limbs —strong old-lady-finger things that look more delicate than they are— hold just the weight they can bear, bending in all directions under the weight of the dense fruit.

You mustn’t pick the persimmons early because, ick! They’re like sticky chalk on the tongue. So you watch the limbs bear their limit. Some mornings, you might find she released a few orange fruits on the ground. But she mostly carries the load.

Last year, 2019, Miss Persimmon had a crisis. We’ll never know the story of her heartache. The three or four (maybe many more) years prior, the tree was burdened, straining to hold the fruits. Then, ugh. Last year, unapologetically, “This is all you get. One persimmon and a bird’s nest.”bare persimmon tree

I haven’t been to the farm as often this year due to Covid, so I haven’t been following Miss Persimmons’s progress closely. But oh my gosh! When I visited mom and dad last weekend for dad’s birthday, this is what I saw. That’s the same (and a single) tree. And keep in mind you, they’ve already picked a few. loaded persimmon tree

Metaphors and lessons

Metaphorically, more branches than we can shake a stick at in a post.

  • She rested then she could?
  • She felt embarrassed for the one persimmon so now she’s showing off?
  • Persimmons and persistence?
  • or maybe Persimmons on the dangers of persistence?

But let’s face it. This right here —the tree’s exuberance— is ridiculous. This year is ridiculous.

Whether she rested and now she can (when hardly anyone can!) in 2020 or whether she’s showing off just because it’s 2020, she overdid it. She bore more than she could carry alone, more than she should carry alone. In her exuberance to give, she found herself in desperate need of support.

Fortunately, mom and dad love her.

For me, the lesson is not about not giving. Giving is beautiful, but give what you can. Comfortably.

Or maybe the lesson’s about your support group? If you can’t self-regulate, if you can’t be reasonable, make damn sure you have a Mama and Papa Nick on your team to throw some support under your burdened limbs when you’re holding out your gifts.

Maybe the truth nugget is that my family needs to learn how to treat a persistent persimmon tree.

I’m not done chewing on this, but the lessons in the persimmon tree splay in more directions than I have the energy or capacity to explore in a blogpost.

Maybe one of those persimmon lessons speaks uniquely to you. If so, take it and sit with it. But don’t pick the fruit too early. Seriously. When it’s ripe it’s yum. But too early, just ick.

©Pennie Nichols All Rights Reserved 2020

Love Out of Love

Today would have been our 32nd wedding anniversary. But we fell out of love.

We’re human. We’re imperfect, and about half-way through those 32 years that might have been, we divorced.

Our status changed, and we tick Divorced on forms now, but that status, the divorce, didn’t define our relationship. Love, even when we were out of love, defined us.

Love out of love

My ex husband and I fell out of love and after almost sixteen years of marriage, we finalized our divorce. We went through rough patches during the transition, but even those rough patches didn’t define where we would land after we spun out.

Love did.

NOTE: I’m not sharing our story prescriptively. Our story can’t be every divorced couple’s story. I’m not suggesting that this is the better path, the good vs. the bad journey. This is not a lesson. I’m sharing this because the dates and numbers bring our story round to my heart. I’m sharing because I’m grateful.

I’ve written about this before, but today the numbers compel me to revisit. Almost 16 years of marriage. Just over 16 years divorced. Today would have been our 32nd anniversary. We lost something, sure. We lost a lot, but I learned to carry love forward and allow it to redefine itself. I’m sharing our story again because I’m still grateful.

Our story

I’m grateful for many things, but the first swell of gratitude to spring from that well is our children. They are the tether, the balance, the bond that helped redefine my feelings for and relationship to my ex. Thanks to them, I can make space to celebrate some of the good things these 32 years allowed, starting with the wedding.

We were married under two ancient oaks on my college roommate’s parents’ property, Deux chênes, where the stars and stripes of the U.S. flag alongside the cedar of the Lebanese flag hung on the gates to welcome guests. I’m grateful to Nora and Gerald for hosting our quirky wedding.

I’m grateful for my friends (former roommates) who stood with me for the ceremony. I’m grateful for all the family who attended and participated: my uncle who married us, my cousin who gifted us with hundreds of photos, my cousin who styled my hair, my cousin’s son who carried the rings. I’m grateful for my parents who supported me as I took that adult leap.

The day wasn’t perfect. August in Louisiana! A deluge just hours before the outdoor nuptials soaked the grounds. My dad had to find a giant swath of green tarp post haste. The pre-ceremony included meltdowns and nerves. Post ceremony found me standing in ants for a photo, then spending some time kicking and writhing as they scurried up my wedding gown. To seal the imperfections, when it came time to sign the certificate, we learned that ministers don’t bring the marriage certificates to the wedding. Oops!

You’re not really married, my uncle sighed.

It wasn’t perfect, but the things I remember most are the beautiful moments. The lush air as the ceremony began. The belly dancer who led us away post vows. The dresses my mom and my mother-in-law wore. The belly dancing during the reception. The food. The laughter and joy of family and friends.

Celebrate the love

I lift up those good memories of our wedding day. I also celebrate the 16 years inside the marriage: the adventures of raising three children; our two homes; the mutual friends we made along the way; the meals we shared as a family (chicken rice again, Baba?!) and with friends; the wine tastings; the vacations on a budget; the church we found together.

The church was one of several sacred spaces we discovered together. When things fell apart, the path through was a memory from that sanctuary. Years before the divorce, I sat in our church when Sharon Williams Andrews delivered a sermon on forgiveness as a guest minister. I can honestly say that her words took purchase in my heart and carried me through many moments of the 16 years after the divorce.

Post divorce, my ex and I moved on. We found new partners, new places, new circles, new journeys separate from each other, yet made space for love on the other side of being in love. We come together for holiday and special occasions. We’ve even squeezed in a beach trip together.

We’re divorced for many reasons. We made mistakes. We weren’t a match made in heaven, but we’re happily divorced for a more important reason. We allowed love. And reflecting on that, I would argue that, despite the divorce, I chose well when I married my ex.

He’s a keeper.

My dad called last week to tell me what a wonderful visit he and mom had with my ex. My ex went to the farm (bearing groceries as usual) two weekends in a row, not for a special occasion, not because the kids were there. Love carried him there. He knows my parents are limping through these months, mom’s Alzheimer’s and dad’s heart intensified by the isolation of COVID. He took time, spent time, cooked and visited. Love.

My grandmother would have said, “He’s a keeper.” Except I didn’t keep him. 

Love still wins.

We had a marriage that didn’t last, but the divorce didn’t define us. The divorce didn’t wreck the relationships that become entangled in a marriage. We still share love for each other’s parents, we still have mutual friends, and we are still a family.

Falling out of love didn’t define us. Love did. Love wins, and I’m grateful for this twisted road we took to know love.

©Pennie Nichols. All Rights Reserved 2020

 

Happy Father’s Day

Gifts

He gave me my first typewriter.

He bought me my first car, a red Toyota Celica stick shift because everyone should know how to shift a stick.

Sure he left me sleeping sideways in a swing for a few minutes when I was barely one, but he came back with the camera and took the photo. Twenty years later, he gave me his Nikon.

He infected me with the lure of dark rooms, trays of chemicals, and glossy black and whites, so I signed up for a photography class my last semester of undergrad.

He gifted me with curiosity. I languished way too long in college, but that’s not what I mean. I’m talking about that innate curiosity that today sends me down Google rabbit holes and through mazes of YouTube tutorials. Always yearning for new skills.

Space

Happy Father's Day!

My first typewriter circa 1968

Did I mention he gave me typewriters? My first one. And then some.

I took a very crooked path, sometimes I felt I had lost my way, but after years of art-numbing theory courses, distractions, and living life, I’m back. Sure, it’s a PC, not a typewriter. It’s a Canon, not a Nikon. But I’m showing up. And that’s also something he gave me. The stick-to-it-ness. The courage to come back, to try. That steady hand, that stubborn determination.

Mostly, he gave me space. When I was two, to feed the hens he’d already fed. When I was ten, to explore the castle on the hill. When I was fifteen, to hole up in my room for days with cassette tapes and a typewriter. Through the years, to sign up for the all the lessons, horseback, judo, painting, pottery, piano, topped off with thirteen years of college! He gave me space to learn and explore.

He had seen my scores, which, like his, highlighted sciences and numbers, yet he allowed me to explore literature, art, speech, creative writing, liberal arts. He gave me the freedom to nurture that chaotic part of me, that inner artist child. The crooked path.

Covid19 chronicles

Emotions are high these days. Mine may have spiked in one of those twenty-some hours I spent sitting with dad in the hospital. Heart work. Even though the procedure is now routine, you can’t avoid entertaining mortality when the lessons involve aortic valves, Cath labs, and beating hearts.

I watched him, I saw myself. Those fears behind a curtain. The stoic, I got this. I know him. Left brain strong, right brain leanings. I watched and learned a couple of things.

First lesson: He’s not the greatest patient (I warned my kids that they’re in trouble if I inherited his hospital patient gene). In his defense, he carries a heavy load and no matter where he is, sitting still and waiting is a struggle.

Second lesson: he talks in his sleep… with some profundity!

When I saw him doze off, I wiggled on the hospital couch to resume my mini reading vacation. My plans were quickly thwarted when he began speaking very clearly, as if sitting at a table with a dozen colleagues.

“I wonder what happens when you get to the last page?”

The last page

Right away, I knew I had to take notes.

I could chew on the first line for years, but he continued, “You take a picture of the next-to-the-last page.”

What!?

He kept going. I couldn’t keep up, mostly because of the first two lines. What is this last page?

“It looks very thorough if what I see is correct.”

Most of his life, dad followed the science, gave his energy to his left brain, but his right brain has always been strong. Maybe part of me is the version of him that managed to wriggle lose from the confines of left brain. Whether left or right, science and art, we share this —facing the last page—, we share our mortality, imagining it, facing it, wrangling with it.

“Where is the next-to-the-last page?” he asked.

A question I wanted to ask, but he voiced it and quickly offered a response.

“I wouldn’t want to answer that.  [pause] We just passed through.”

My eyes focused on his chest for the rise and fall of life. Thank god!

Happy Father’s Day!

Happy Father's Day

We all have a father, a sperm donor at least. We don’t all have a dad.

I have a dad. I am still learning how much this has blessed my life. After this week and as we move through Covid19, I’m grateful that my dad is still here with me. Even on the days he confuses me and scares me with his sleep talking. I’ll think about that last page for many days, years even. What do we do when we get there? I’m immensely grateful that this week wasn’t a last page for us.

Thanks, Dad. I’m grateful for all you’ve taught me, all the space and love you’ve given me.  I’m sorry we can’t be with you today to celebrate, but know I love and appreciate you. I promise, after we get a couple more Q-tips up our noses, we’ll be right over with shrimp and coconut cake to make our own Happy Father’s Day time.

©Pennie Nichols. 2020. All Rights Reserved.

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