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.

I don’t care: A caregiver’s love

I don’t care.

The dishes. You have to watch her. She forgets to use soap. Or sometimes, she doesn’t rinse it off.

I don’t care.

Are you sure about that? She’ll probably pull up the flowers too.

I don’t care.

I’d be careful about that. What if she paints the wrong thing?

You know what? She did. And I.don’t.care.

She did it wrong. We looked up, and the floor and railing close to the column were yellow. She had painted beyond the column.

I don’t care.

I checked on her in the flower bed where she was busily pulling weeds, and sure enough, some flowers had come up with the weeds.

I don’t care.

And my dishes. So what!?

If I can create for her even the tiniest opening into a world of doing, contributing, helping, if going there brings her a moment of joy —a fraction of a moment!—, I don’t care if she can’t do the thing perfectly. I don’t care if she gets it all wrong.

The tiny inconveniences of re-rinsing dishes, rescuing flowers, removing errant paint? I don’t care. These are the biggest ways to love her now.

©Pennie Nichols. All Rights Reserved. 2021.

For more stories about mom’s journey with Alzheimer’s explore my website.

We’re not okay. But we’ll be fine. We tuck and roll.

Tuck and roll? I learned it in a gym, as part of exhausting drills and practices.

I’m exhausted again. But it’s different. Different from a long run or an intense workout because I don’t recover all the things. No standing in the mirror to check the shape of my tummy, the tone of my thighs. No bonus endorphin boost.

I’m just tired.

I ask dad to send mom to my house in the gator. She no longer drives cars but still has the skills, so…

Send mom down in the gator. 

A few weeks ago, mom and I started my dam sunflower project: a tunnel of mammoth sunflowers flanked by shorter ones along the top of the pond dam. Today, a sunny, cool morning, we’ll plant the second round of seedlings.

Mom loves to do things with me. I say “with me” but honestly, she loves to have something to do with anyone, to feel like she’s contributing, helping.

I hear the gator, expecting to greet a happy mom, but she climbs out sulky, weary.

What’s wrong, Mom?

I’m just tired.

Oh, you didn’t sleep well?

No, I’m just tired of this, she waves her hands in the air to fill in words that escape her. I’m tired of being alone.

Thud. Reflex hand to chest.

Mom’s not alone, of course, and now that we have sitters, she spends very little time alone.

I’m tired of being alone.

I give her a long hug.

I’m here now.

I push down the heaviness as I load the gator.

You ready to plant some flowers?

She manages a detached smile.

After we load ourselves, I tell her, Hang on!! and gun the gator up the hill.

There it is! The joy in her eyes.

I wonder if revving the gator brings back memories of her gold T-bird with rear doors that open backwards. She loved to taunt dad, gunning the engine as she left tread on her way to…

She holds her hat to her head. Where are we going?

Thelma? Louise?

To the pond. To plant some more sunflowers.

Help.

Dewberries are in season and briar patches cover the pond dam. I give mom a bucket to pick berries while I dig forty holes for seedlings.

A year ago, mom and I could tag team a project like this, digging, adding nutrients, seedlings, soil, water. Now, I talk her through the steps she.taught.me, but she loses her way, tangled in the briar patch of her hippocampus. She can pick berries without reminders, so, Here’s your bucket.

About twenty holes in, I hear “Help.” No exclamation in her voice. Just “Help.”

I don’t see her at first. She rolled down the bank through briars and berries, just short of the pond.

I reach out, but she refuses my hands.

I lost all my…

She waves one hand looking for the word. Berries.

I find her bucket a couple of feet away in the briars and collect her berries. She watches, leaning up the bank, chest and arms resting between bent knees.

When she’s satisfied, she lets me take her hands. She’s slight, but I struggle to pull her up. Visions of both of us tumbling into the pond splash through my mind. I hold tight until we’re safely on the flat top of the ridge.

There, I say turning to pick up the berry bucket.

But she keeps walking backwards, as if still pulled by an incline.

I can’t stop.

Her voice is soft, her arms flail.

I grab one of her hands and put an arm around her waist. Her legs keep stepping back. I walk (push?) her to the gator.

Sit for a spell, Mom. Drink some water.

This isn’t the first time she complained she couldn’t control her legs. Is it part of this disease? This isn’t the first time she rolled down the ridge.

When mom helped me with the first round of sunflower seedlings, she rolled down the west side of the dam, away from the pond. She managed to stand up, but she rolled back down.

Wait! I ran to her, gave her my hand, pulled her up. When I let go, down she went! Again!

I grabbed her hand. This time I didn’t let go until she was standing on the flat middle of the ridge. She laughed.

Well, that’s a story!

Mom trained to fall well most of her life. She still falls well.

Last year she helped dad unload some things from the bed of the truck. Done, she went to climb out, the gate popped open, and mom went flying through the air and onto the concrete driveway.

Tuck and roll. Tuck.and.roll!

Mom trained for this. As a coach, she trained me and hundreds of other teenagers how to fall.

When you play the game, a fall is inevitable.

Tuck and roll!

Dad turned in time to see mom sitting, chest straddled through her knees, on the driveway, a few scrapes, but not a single broken bone.

Today, I pull her through her straddle, up the ridge, out of the berries, but she doesn’t laugh. She sits in the gator, sips her water, rests.

We’re tired.

I want the exhaustion endorphins, dammit. I want mom to receive some too, to take the deep satisfying breath, feel the renewal of her effort course through her blood.

But the endorphins aren’t coming, are they?

Maybe this feeling is premature grief? Or its evil sibling, dread, stealing the one gift this disease offers: live.in.the.present.

Perhaps this is grief’s companion? Helplessness? Like rolling through briars down a ridge?

Tuck and roll, tuck and roll, we’ll save our bones, but none of our tuck and roll training will save us from the fall. We’re falling.

Maybe the feeling is all these and a lot more things.

I’m not sure how much longer we can tuck and roll, how many more bones we can save, what we can hold onto.

We’re tired, lonely exhausted, helpless falling, grieving the berries we dropped, even as we plant flowers together, hold each other on the ridge, and zoom up the hill in a noisy gator with a smile. We’re terrified.

Tuck and roll.

What’s tuck and roll? It’s the grace you add to your fall.

I refuse to let walking backwards be mom’s final effort today. I take her out of the gator. We make one last round to admire the seedlings, place dried grasses around their bases, load our tools, then head home.

We’re not okay. This fall is inevitable, and we won’t recover completely.

But we’ll be fine. On the other side of this, after we tuck and roll, we’ll have berry stains and briars in our bottoms.

But we’ll be fine.

©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.

Dear Dad, I see you.

Dear Dad,

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

The message is simple:

I see you.

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

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

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

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

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

The isolation.

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

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

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

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

You answer the same questions twenty times a day.

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

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

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

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

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

I’m grateful for you.

Thank you for taking her to her neurologist this week.

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

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

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

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

I’m grateful.

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

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

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

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

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

Pennie

©Pennie Nichols. All Rights Reserved. 2020.

A long row to hoe

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

Collective crisis

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

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

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

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

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

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

Staying home means staying away

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

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

I don’t stay long.

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

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

Back to the garden

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

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

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

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

A long row to hoe

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

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

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

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

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

©Pennie Nichols. All Rights Reserved. 2020.

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

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

As if you’re jogging too fast.

Unable to recover your breathing.

Gasping for air.

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

Blocks? I think a couple of ticks.

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

Like that last pushup.

Your arms struggle to push your body from the floor.

But you just can’t.

You collapse.

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

I wait a couple of ticks, then:

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

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

You feel weary.

I feel you slipping away.

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

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

But your mind is muddled with fatigue.

The words tangle in their own descenders and beaks.

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

Sometimes we can untangle the words together.

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

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

But by the time you find me, . . .

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

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

Here, have some of my water.

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

Still . . .

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

©Pennie Nichols. All Rights Reserved. 2020

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.