All Saint’s Day, and the difference one song can make.

Today’s Mom post is about memories and grief and the power small triggers have on the lens of heart ache.

Last night I started a note about All Saint’s Day. The experience of celebrating the holiday has stuck with me. I wanted to record some of my thoughts about it last night, so I would remember what to tell Eliza about it this evening. It was a happy walk down memory lane. I went to bed with a smile on my face.

This morning I sat down at the keyboard, with a cup of coffee and some music playing in the background. I reread what I jotted down last night. It, again, was a happy trip down memory lane. Then David Bowie happened.

Recently I began associating the song Space Oddity by David Bowie with my Mom. It is a trigger now. It is amazing the difference one song can make.

1 November 2019. 12:17am.

Today is All Saint’s Day. When I lived in Grenada, down island in the Caribbean, All Saint’s Day was one of my favorite times of the year. It is a holiday celebrated by remembering the ancestors and loved ones who have passed.

Families honor the deceased in such a beautiful way. There is dancing, singing, splashing rum and water on the graves, saying prayers, telling stories, sharing laughs, and at the end of the evening they will light candles that they place atop the graves. The lighting of candles part is my favorite. It is beautiful to see, and even more so to feel. It is a sight that grabs you, washes over you, breathes a calm and awe into you, holds you there in that moment, gazing, entranced in the twinkling candle light, and then lingers in your memory forever with slight homesick nostalgia.

When I go back there, when I close my eyes, I get lost in the memory of candles that felt like stars twinkling in the Heavens. It feels like peace. It feels like home.

Tonight, we will walk outside and look at the stars. I’ll take a few moments to watch them twinkle, then close my eyes and remember what that looked like on warm Grenadian nights. Later I will light a candle in our home. It will be for Corky, and for all the other amazing Pela and Richardson and Horrocks and DeMarco relatives that haunt our photographs and stories and jokes and family lore. I will bring Grenada home.

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1 November 2019, 11:50am.

Today is All Saint’s Day. It is one of my favorite holidays we don’t celebrate here in the US. I brought this appreciation of the holiday home from the Peace Corps. It is a holiday where families celebrate their ancestors and relative who have passed.

Today is All Saint’s Day and I am thinking about my Mom. She hasn’t passed, but we have been mourning her for nearly 10 years. Dementia has taken all the lives she could have lived.

I have been thinking about her so much over the last few weeks. It all started with a song.

A few weeks ago I got to visit her. It was a typical visit. We walked around the nursing center for a few laps. We watched a Mountaineer football game. I talked to her. Showed her pictures of the granddaughter she would adore. Facetimed with Matt and Eliza and Katie. I talked to her. She repeated a little, but for the most part she stared at me, with a piercing gaze for a few seconds, then looked away, disconnected.

On the drive back to my hotel I put on some music. It was a playlist I could just ignore, background music, as I replayed our visit in my head, taking mental notes of her behavior or engagement. Habitually, this time, driving home, is used to set her new benchmarks for cognitive drops. Mom’s new normals.

“She is just floating through space. Waiting for the end.”

My words startled me. I said them audibly and absent mindedly. Lost in quiet thought, hearing myself say it out loud, it stung. I meant it. I don’t know how long I have thought of her like this, but it was true. And then there was the song. I catch it midway through. Space Oddity.

“I’m stepping through the door
And I’m floating in a most peculiar way
And the stars look very different today
For here, Am I sitting in a tin can
Far above the world
Planet Earth is blue
And there’s nothing I can do”

Fuck you, David Bowie. I am already vulnerable, there is no need to twist the knife. But, I need this. I lean in, full tilt. I want to sing along but my mouth has gone dry.

“Though I’m past one hundred thousand miles
I’m feeling very still
And I think my spaceship knows which way to go
Tell my wife I love her very much she knows
Ground Control to Major Tom
Your circuit’s dead, there’s something wrong
Can you hear me, Major Tom?
Can you hear me, Major Tom?
Can you hear me, Major Tom?
Can you…Here am I floating ’round my tin can
Far above the moon
Planet Earth is blue
And there’s nothing I can do”

I love this song. It is heroic. An astronaut braving the unknown. Charging into the future, for all of us. Taking with him the best intentions of humanity. Undeterred by risk, and moved by the beauty of space, as he drifts farther and farther away.

I hate this song. She is no longer heroic. We are navigating the unknown, awaiting for something worse than now. She is floating through space. Lost inside her head, farther and farther with each neural connection that dims. Taking with her so much lost potential. She is merely existing, drifting farther and farther away.

A few weeks ago it started with a visit and a song. I realize the mourning process and the sadness causes me to reach, finding new associations or outlets to assign to the dull ache in my heart, but the pain is mine. It is my pain to navigate, through all the outlets I want to assign.

In time I know I will be on the other side of this. It will hurt less, but not today.

Today is All Saint’s Day.  Today I heard a song and I thought about St. Jude, the patron saint of lost causes. May he comfort those who are drifting through space, and navigating the unknown.

Undeniable likeness of Helen, Vol. 2

One of the staples to each visit with Mom is a review of recent photos. I take my iPad and we swipe through photos of Matt, me, and our families. I fill her in on the stories around some of the photos. She couldn’t look any less interested. However, she typically perks up when photos of Eliza pop up. They hold her gaze a little longer.

I have mentioned to Katie and Matt before on how I believe Eliza looks like my mom. Some photos are beautifully similar.

 

 

The chins.  The laugh-lines.  The shape of their faces.  The noses (a little bit).

The power of Helen is strong in Eliza.  It is comforting.  I love it.  Mom would love it too.

 

A break from tradition.

I’m going to break with tradition today. Today’s blogpost is dedicated to my Dad.

I have an iPad on its last legs, plugged it in to transfer old photos and whatnot off of it. I found this gem from last Thanksgiving.

The discussion went like this.

Dad: I’m going to get this for Eliza.

Me: No you’re not.

Dad: Yeah.  She’d like this.  She needs this.

Me: No. It’s too big to live in our house.

Dad: I’m going to get this for her.

Me: No.

Dad: Yeah.  Then I going cut the back open, get inside it, and then scare the shit out of her!

Me: No.

Dad: Too scary?

Me: No.  I’m all for that part.  It’s just that you’re not tall enough to fill it out.

Dad: Huh…(looks the bear up and down slowly)…huh…Well…huh…(keeps sizing it up with serious look on his face). Well…Shit.

 

I miss your irreverent sense of humor. I love you, Dad.  I miss you.

bear

The upcoming visit.


I got a call this afternoon.

“Hi Mr. DeMarco. It’s Lori from Berkeley Springs.  It’s not an emergency.”

I always appreciate they lead with the ‘not an emergency’ part.

“I wanted to call and tell you Helen has shingles. Did she have chicken pox as a kid?”

I have no clue. I assume so. She was hell-bent on Matt and I having playdates with the kids in our neighborhood who got chicken pox first, anxious for us to get it out of the way.

“Mr. DeMarco, we are going to isolate Helen for now. She started on medication.  It’s a 7-day supply, she should be fine after that.”

I ask if she is in pain or is it itchy.

“Nothing seems to be scratchy, and there doesn’t seem to be any pain, nothing seems to hurt.”

The nurse ends the call with reassuring and kinds words. They always do.  My mind started wandering after ‘scratchy’.  I’m in another place in my head.  I mumble a thank you and a bye.

I’m in my head, thinking of what my Mom will look like when I see her over the Labor Day weekend. I wonder what we will talk about.  More accurately, what will I talk to her about?  There have been a lot of changes recently.

It’s 3:30am. Eliza woke up from a bad dream.  I had her crawl into bed with Katie and I.  She is asleep between us with her little knees in my back.  I can’t get back to sleep.  I keep repeating over and over in my head, “nothing seems to be scratchy, and nothing seems to hurt.”

From my side of the bed I can look out past the balcony. I can see the wind blowing the leaves of our breadfruit tree.  My bad dream hits.  I panic and get hot.  My mouth goes dry.  It’s the situational-sadness that jumps up into your throat and you can’t talk, you can’t describe it.  It just chokes you.

I’m glad Katie and Eliza are asleep. I feel like I now have time to feel this way.  I’m isolated.

It’s my bad dream. My parents are both gone, one to death, and one to disease.  And then the question hits.

Do I tell my Mom that my Dad died?

Do I tell her he is gone? Do I tell her the father of her boys is gone?

How do I say it?

She may not have the mental capacity to remember my father. She may not have the mental capacity to understand that he is dead.  But there is a muscle memory to love.

Would her heart feel scratchy? Would her heart feel pain?

When I visit, we will look at pictures and videos of Eliza, Katie, Matt and Josh, the island, and our new home. I’ll tell her about my new job.  I’ll tell her we see stingrays and sea turtles every time we go to the beach.  I’ll tell her I make a good Italian-style meatloaf.  I’ll admit, again, that my chicken and rice soup isn’t as good as hers. We’ll talk small talk and WVU football.

I’ll run out of things to talk about. I’ll struggle on whether I tell her about my Dad.  It’ll linger in the pit of stomach.  It’ll feel scratchy.  It will hurt.  Do I tell her?

Morning is now slowly coming over the mountain. I feel like shit.  I’m exhausted.  Eliza’s little knees are still in my back.  I’m sad.  I’m sad for my Mom.  She would want to know.  I’m torn.  Do I tell her?

I have a month to stew on this.

How do you say it? Is it quick like saying “hi”, or slowly, explaining all that I know.

I have the rest of her life to stew on this.

She would want to know. She may already feel it.  Maybe a confused and far away ache.

This is all new. I’m unsure on how you are supposed to live without your father.  I always assumed I would have more years to figure that part out.  I’ve learned to live with out a mother.  This is different.  It all changed over night.

Do I tell her?

This feels scratchy. This hurts.

The Continuing Education of the “New Normal”

The two hour drive from D.C. to Berkeley Springs gives me time to build my courage on the way there. I give myself a pep talks. Visits are difficult. They are incredibly emotional. Mom’s disease has stolen her, and I struggle with it at times.

Every mom visit is something new. She is talking less. She is less steady on her feet. She engages in eye contact in shorter intervals and keeps her head down. I consider this the continuing education of dementia.

Dementia is a horribly cruel disease. An easy fact to comprehend, and an excruciating fact to live.

Part of this education is physical and mental and learning the ever-changing capabilities of my mother. They seem to ebb and flow, continually decreasing little by little. These new levels of decline are what we call the new normal.

Part of this education is emotional and learning to accept watching your mother slowly disappear before your eyes. She lost her ability to engage in conversation, to feed herself, etc…. I remind myself of this to and from Berkeley Springs every visit. I am rational. I know this will never get better. I accept that. Doesn’t make it any less difficult.

Sunday’s visit was a new normal. Sitting down in the chair beside her wheelchair I smile and offer my ceremonial “Hi Mom!”

She stared at me for a little bit. It felt like a long stare. Silence feels heavy in those moments.

“Hi Mom.” Her response came out muffled and slightly slurred.

“I’m not Mom. What’s my name?” I am trying to keep smiling and sound upbeat.

She stared at me for a while. Her eyes are beautifully expressive. She stared and said nothing. She genuinely didn’t know who I was.

This didn’t feel like a temporary slip of the memory. She has confused me with someone before. I was Billy for a while.

There was a chunk of time after I came home from Liberia that she called me Billy. It lasted a few months. She had a brother named Billy. We’re both tall. Had beards. Handsome with charming smiles. I was Billy for a while but that passed and I became Joey again.

“I’m not Mom. What’s my name?” My second, third, fourth, and fifth attempt over the next hour come out flat, and like a whisper.

She’ll stare at me for about 30 seconds to a few minutes, then eventually lose interest and look away.

Over the next 45 minutes we periodically look at pictures of Matt and me, playing the game of pointing and asking “Who’s this?”

Matt is identified each time. With me there is silence. She stares at me, deeply, then looks away as if the question times out.

She has struggled to remember my name for about a two months. After a while she rattles it off. No harm no foul, and I think nothing of it. This, however, is different. She has no idea who I am.

The two hour drive from Berkeley Springs to DC gives the time to continue my emotional education on the way home. There is a new normal. I’m not her Joey DeMarco anymore. I’m not even Billy. I have become the polite stranger that comes to visit. I wasn’t ready for this part yet.

Matt is now the last man standing.

Undeniable likeness of Helen

My coworker asked me this morning if I had any new pictures of baby Eliza.  While I thumbed through photos on the iPad my coworker asked, “Do you have any baby pictures of your mother?  I mean, I see you in Eliza, but does she look like your mother or father too?” 

 I’d never thought of that question.

When Eliza was weeks old Katie and I held up her photo beside my baby photo from around that age.  The resemblance was uncanny…and a little flattering to me, not so much to Katie. 

Looking at my Mom’s childhood picture I can see her in Eliza.  They have the same eyes, and nose.  They share similar smiles.  Looking at Eliza, you can see that the “Power of Helen is strong with this one.” 

Image

Image

It is moments and discoveries like this I know my Mom would love to consciously be part of.  She would have a fun laugh comparing pictures like this.  The sad reality is in the near future these two women will not remember each other.  Eliza Helen met Helen Katherine too early, and Helen Katherine met Eliza Helen too late.  As Eliza gets older my mother will be a memory, a spirit haunting picture frames, existing as lore told in stories by Matt, Katie and me.  However, it is comforting to know they will share more than their name.  

Eliza, I believe, will grow up to be headstrong, kind, stubborn, able, compassionate, patient, determined, and have an unwavering sense of family.  Some of these traits she will get from Katie and me.  If you ever wonder where she gets the rest of her character just look her in the eyes, and remember she is a Helen.    

A morning in.

Saturday was a Mom visit. The visit was a difficult one.

When I arrived she was lying in bed. I stood in the doorway making small talk (me asking Mom questions and she repeating the question a few times over) when a nurse walked by. “I just put her down for a nap. She looked so tired all morning.” With that I decided we would break from our usual milkshake run for a morning in.

I struggle with these sometimes. I fell lost for things to say or do. In the breaks between questions I stare at her. I try to think about what she may be thinking about. What is happening inside her head? What does she think about when she turns her sometimes piercing stare at me? I want to tell her that I am sorry this is happening to her. I truly am. There are so many other things I would love to talk to her about. These are mornings in. They are hard for me. So is every car ride home after.

We looked at pictures. I showed her photos of her grandchild. This is so heart wrenching for me. I almost want to keep the photos to myself. Hold them for just me, like a secret I keep from her. It is not that I don’t want to show her. This is her grandchild. She has no other. I don’t want to deprive her of that. But I almost hold them back because I want more of a response. It is one of the things I want most from her. It is the one thing she is unable to give me.

After a few pictures I read a story instead. I know she is not listening. I am like the radio channel they play over the community ads on whatever channel she has playing on her television at that moment.

While reading I start thinking of all the things I want to be different. This is a road that always rips your heart to pieces, but you can’t stop yourself from going down. It’s compulsive. It is the same game you play when you’re driving down the highway, or lying in bed at night around the holidays. I can’t stop it, so I recognize it, and I make an honest list of all the things I wish my Mom would say to me, or talk to me about.

1) I wish my Mom would ask about her grandchild, Eliza Helen.

2) I want her to know that Eliza Helen is named after her, Helen Katherine.

3) I wish my Mom would sing to my child all the songs she would sing to Matt and me when we were babies.

4) I want to listen to her calm voice as she explains to me how to sooth a crying baby, or get her to sleep through the night.

5) I wish she would tell me how beautiful her grandbaby is.

6) I want to talk with her about what a great woman my wife is, what an amazing mother she is, and will be, and how lucky I am to be married to her and that as a parent she is happy I found a great partner.

7) I wish she would help me to ask the questions I don’t know that I didn’t know, but should.

8) I wish she could talk to me in the way parents do when you become an adult, and they become your friends.

9) I wish, just one more time, she could say, and understand what she is saying, not just parrot back the words, that she is proud of me.

I think of these things while I read. She has fallen asleep. I close out the book on my iPad. My background is a picture of a smiling Eliza. I close my eyes and visualize my mother holding her grandchild. The Kathy of long ago would have been the best grandmother.

The nurse comes in. It is time for Mom to eat lunch. I take that as my cue to head back to the highway, and back to DC.

On the way home I sing all the songs she sang to me as a child. I call my wife, who answers the phone while holding the baby, and I tell her I love her. I think about the book I going to read to Eliza when I get home as she is swaddled on my lap.

I drive on, staring out the window. These are hard mornings. I am sad, but I feel proud of myself. After all the terrible things we are all in the best places we can be. I want to smile about it, but I just can’t. I want my Mom to smile again, but she can’t. I think about how there are so many smiles are lost due to dementia.

Next week we’ll do it again.