My mom passed away in early January. She went peacefully, and painlessly–the very best scenario I could have imagined. In the days leading up to it, nurses and staff knocked on the door to come in and say goodbye. She was a very loved and cared about woman, who’d lived a life of many iterations.

This blog started in the middle of her story, as a way to chronicle our journey in pictures, videos, and words. For me it was a place to think, and to remember, and to process. And now it’s a place for me to record a goodbye.

Sharing the eulogy I wrote, and the video compilation we created to celebrate the life and the legacy of my mom Kathy.

My partner accuses me of being kind. I suppose it might be true sometimes, and other times people would debate it. But I hope in the times it’s true that I’m kind like my mother was. 

Life wasn’t easy for her in ways that I think, helped her to see when life wasn’t easy for other people. And especially in those situations she found it important to be kind. To be generous and help others because you can. 

During times when her illness was taking hold, she struggled.  We didn’t even know what the illness was at first…or when exactly it started. We’d later learn it was early onset dementia. And still later actually specify it as Frontotemporal Dementia. 

When we didn’t know what was going on or what to do, friends and family members were generous and kind, trying to help her. For that I will always be deeply, deeply grateful.

And as her disease progressed, something else became very evident, something that was always there, but was thrust into the spotlight…Kathy was very resilient. As she lost the ability to care for herself, to walk, to talk, to remember, it was amazing to watch her adapt, to find new ways to communicate, to depend on the help of others, to express herself. She persevered, and though it was sad to watch, it was also inspiring. 

My therapist has taught me about nuanced experiences. That you can and often do feel more than one thing at the same time. This week is a nuanced experience. Saying goodbye to my mom, I have a lot of feelings, but I keep coming back to relief. I’m relieved that she won’t suffer anymore. I’m relieved that she was cared for and cared about by so many people. I’m relieved that my brother and I were with her when she passed. And I’m relieved that she was comfortable and her passing was as quick and pain free as we could make it. 

I want to close by sharing a few Kathy-isms. Wisdom that as her children we heard so many times they are just ingrained in us…and have taken on folk wisdom status in our relationships. 

No matter how great your outfit is, “It’s not cool to be cold.”

“There are three things you never buy generic—ice cream, toilet paper, and Q-tips.”

“You don’t have to like it to eat it.”

“BFBR—bridges freeze before roads”

“Anything worth doing is worth doing right.”

Saturday’s visit was quiet.  Sunday’s visit was overwhelmingly silent. 

On Sunday I completed the finishing touches on the Holiday decorations for Kathy’s room.  Standing on a chair to attach glittery snowflakes on the ceiling, pulling the tape from the dispenser, stepping down, moving the chair to around the room and repeating.  Despite my best efforts, it wasn’t a silent operation, to say the least.  Sitting up against her elevated bed, Kathy dozed.  Waking for a minute or two.  Looking up sleepily, her blank expression neither disapproving of the commotion, nor pleased with the festive highlights around her.  Just blank.  Nothing. 

That is nothing new.  It has been that way for longer than I can pinpoint.  So, I completed my work as quietly as possible.

Once done I sat on the stool beside her bed, and we watched a Hallmark Holiday movie. Occasionally, during the movie I would ask Kathy mundane or silly questions.  I was trying to engage.  Anything for mental stimulation, even innocuous quips to entice a smile, agreement, or a role of the eyes.  Nothing.  No response.  Sometimes Kathy would look at me, more a reaction to the sound of a voice that was not the television, but mostly she just stared out blankly, towards the window or the tv, not focusing on either.  Just quiet stares.

Her arms were crossed, like she was hugging herself, or just holding on to the sleeves of her t-shirt.  On occasion her fingers would twitch, but mostly she just sat.  I put my hand on top of hers, then just below it, on her upper arm, and patted her paper-thin skin.  Her head turned slowly, and she looked at my hand.  No expression.  She turned back to the window.  I reached up and held her fingertips.  We watched the rest of the movie, in silence.

So much of this visit was nothing new.  So much was overwhelmingly new.  The silence was deafening. 

In what still feels like recent behavior, Kathy would exhibit all the signs of echolalia.  She would repeat a snatch of speech of another person, either someone speaking within earshot, or heard from the tv or radio.  As part of her dementia, she lost her ability to control the volume and tone/inflection in her voice, so she repeated loudly and often, parroting a sentence over and over.    

As Kathy lost her ability to enunciate words, she did not lose her tendency towards echolalia.  So her parroting was often a garbled collections of grunts and yells.  These “sentences” would repeat, eventually trailing off.

This visit is filled with short stints of eye contact, me smiling, and heaps of silence. Oppressive silence. Screaming silence. Crying silence. Unnerving silence.

I’ll go back in December for a Christmas visit.  Hopefully Kathy will be more “talkative”, but I think we are in a new normal.  For a long time, her attention span has dimmed, and is now unignorably dark.  And now, communication is going painfully silent.      

Hi friends,

With the heightened risk of Covid-19 on the most vulnerable populations, my mom’s nursing home has quarantined all residents. Family, friends, and volunteers are not allowed to visit. These visits are what keep the residents connected and their spirits lifted. I’m raising money to buy iPads to donate to the nursing home so that residents can stay connected to loved ones via FaceTime or Zoom.

If you’re looking for a way to contribute, we appreciate the gift. Any amount is welcome!

https://www.gofundme.com/f/ipads-for-nursing-home-residents-to-stay-in-touch

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.

_____________________________________________________________________________________________
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.

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.

​

She’s still got it. I would say with a little help from us, but that’s debatable. Mom’s surprise ending is the best!

​

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.

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.