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.

Happy Birthday!

Happy Birthday, Kathy DeMarco!

To celebrate this day I am doing my best to follow the mantra WWKD, what would Kathy do?

Mom’s Birthday, To Do List:

• Eat a tomato sandwich, on toast.
• Drink iced tea.
• Listen to some of Kathy’s favorite songs, and sing along…loudly, maybe with the proper lyrics, or with the words they should have used in the song.
• I’m going to do something compassionate for a stranger.
• Give someone some folksy/awesome advice, via a Kathyism. “It’s not cool to be cold.”
• Think of others first.
• Dance, poorly and off beat, but not care. (DeMarco’s are not “dancing folk”.)
• Smile and laugh a lot.
• Call my family.
• Enjoy a good dinner with my family.

Since I will not be able to go visit Mom on this day I am going to take my wife out for dinner tonight and order what I think Kathy would order. Since my wife has wonderful manners I am seriously doubting I will be able to use some of my favorite Kathyisms at dinner, “No singing at the dinner table. Would you like to eat with us, or without us?” (I always found that a trick questions as a kid, and more often than not chose the wrong answer)

I love you Mom. Every visit, and every memory I am reminded that all the good things that I am I got from you and dad. All the bad stuff I either picked up on my own, or it was advice from my brother.

Happy Birthday, Momma D!

Kathy’s truth…like a ton of bricks.

I tell the truth. I learned the value of doing it from my parents. Somewhere in my late twenties my brother once told me his insight on the truth, “You are responsible for telling the truth. You are not responsible for a person’s reaction to the truth.” This sounds simple. I imagine he learned the value of telling the truth from our parents as well.

Kathy DeMarco tells the truth. In the progression of her mental illness her honesty levels have sky-rocketed. Ask her any question and she will answer it honestly 98% of the time*. Ask her the right “type” of question and she will answer it honestly 100% of the time.

We are quickly progressing to a point where she will only repeat back what you have asked, and most times while she will answer a question with the added benefit of echolalia (where she repeats her statement over and over again). However, there are still moments, albeit brief, when she will answer your question in a normal, simple, direct, yet perfect and profound way. An example from last weekend:

Me: Mom, do you like milkshakes?
Mom: No. I don’t like milkshakes.
Me: You don’t like milkshakes?
Mom: No. I love milkshakes.
(I paused for a moment and just stared into my mom’s face. Wow, what a perfect statement.)

The progression of this disease has taken the inflection out of my Mom’s voice. Sometimes, her monotone delivery hits your ears flat and sharp, like a razor, but the simple honesty hits your brain like a ton of bricks. There are times, like that one, where I am caught off guard by the sincerity in her answer. I’ve never weighed the emotional attachment to milkshakes in such a way.

“I don’t like milkshakes. I love milkshakes.” This has been stuck in my head for the last few days. Ask a simple question and you get a simple answer. Sometimes, and quite rarely, you get a perfect answer. An answer where there is nothing more you can add. My mom has produced a few of those.

Back in the Hiawatha days, when Mom was living in Elkins, West Virginia, we went for our routine walk through Big Lots. In those days our routine consisted of picking up Kathy, stopping first for a visit at the Hiawatha store, then Big Lots, then Wal-Mart, and then a stop at Wendy’s (the cherry on top!).

We started our snaking back and forth among the aisles in the front of the store, in the bath and beauty section. As we entered the aisle on one side an older lady (white short hair, sweater with a cat or fruit or kid with a kite on it, and mouth scowling with disdain that someone else dares to shop at Big Lots at the same time as her) entered the aisle on the opposite end. We squeezed pass each other’s shopping carts in the middle of the row, me smiling and nodding, her mouth pursed like a cat’s ass and a look as if I just walked on her white carpet with mud on my shoes.

This pattern continued up multiple aisles, from bath and body through home goods and picture frames, and now into kitchen supplies. The older lady stared at my Mom in each aisle. You could look at my Mom and tell something was not “normal”, and I was already used to the stares from the public, but this felt different. The older lady wasn’t simply starring, it was more like studying. I didn’t approve.

We were an aisle away from pets and food, in the back of the store, when we met for the last time. Kathy and I entered the row from one end, the older lady from the other. When we were almost in the middle, where we had previously squeezed past one another, the women looked at my Mom and then opened her mouth.

Woman: Wei-ell there. Lewk at ye-ew in yeur peink shirt. Aeren’t ye-ew pretty. (Her old women twang is bent on the words like music notes. The accent was so syrupy sweet and southern. It oozed with insincerity. I hate that about southern accents. The melodic tone put on condescending statements makes you feel like a wad of gum they just found on the bottom of their shoe.)
Mom: (Mom turned her whole body to face the woman) Hi.
Woman: Hi-ee. (She made “hi” a two syllable word.) Howh are yieeew todayee?
Mom: I have to piss and shit.

Time stood still in Big Lots for a moment. The old woman’s jaw had dropped open, and her face contorted. Her horrified expression suggested she was frozen on the spot, helpless, and my mother was trying to light her on fire.

Kathy just stood there. Waiting patiently if there was anything else the woman wanted to talk about. When Kathy lost interest in the shocked woman she turned away, and started walking down aisle.

The old woman turned to me, still wearing her shock and horror. I think she wanted to say something. Her mouth sort of flapped once like she wanted to speak, but then couldn’t find the words. I was positively beaming.

Me: We have to piss and shit. Have a nice day. (I didn’t wait for a response just followed Kathy down the row.)

Matt DeMarco once told me, “You are responsible for the truth. You are not responsible for someone’s reaction to the truth.” I imagine he learned this from my Mom. If you ask her the right “type” of question and she will answer it honestly 100% of the time. Sometimes, her monotone delivery hits your ears flat and sharp, like a razor, but the simple honesty hits your brain like a ton of bricks.

My Mom, Kathy, doesn’t like milkshakes. No. She loves them.

And that’s the truth.

*The 2% of the time:
(Kathy sits/lays down in the dentist chair. Dental Hygienist sits on a rolling stool in front of her. Me, I’m standing up against the counter, making sure things don’t go pear shaped.)

Dental Hygienist (DH): Kathy, I’m going to ask you some questions now. Okay?
Kathy (KD): Yes.
Me: Pardon miss, but you might want to avoid asking her “yes or no” questions if you want accurate information.
DH: I work with Alzheimer’s patients. I know what I’m doing.
Me: Okay then.
DH: Kathy, do your teeth hurt?
KD: Yes.
DH: Do some of your teeth hurt or…
KD: (interrupting) Yes.
DH: Or, do all of your teeth hurt?
KD: Yes.
DH: All you teeth hurt?
KD: Yes.
Me: Miss, I don’t think you are asking the right questions?
DH: She says all her teeth hurt. She most likely has trouble eating. I know what I’m doing.
Me: Right. But if you don’t mind, just humor me for a second. Mom?
KD: Yes, Joey.
Me: Do all your teeth hurt?
KD: Yes. (The dental hygienist opens her mouth and inhales. She is about to speak. I put my hand up to silence her, and then continue without looking in her direction.)
Me: Mom, were you born on Jupiter?
KD: Yes.
Me: Mom, were you really born on the planet Jupiter?
Mom: Yes.
Me: Mom, where were you born?
KD: Charleston. West Virginia.
Me: Mom, which of your teeth hurt?
KD: My teeth don’t hurt, Joey.
Me: Miss, you can continue your questions now.