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.
my mom kathy 
Joey and Matt, We are so sorry for the loss of your father. We were unable to attend Corky’s funeral due to medical problems. So sorry to learn of your mother’s illness. We are keeping you in our thoughts and prayers. Barbara and Fred Theierl
Joey, it makes my heart hurt to read this. Dan and I have so many happy memories of being neighbors with your family. The pic of you three with Heidi is priceless.
Praying for the DeMarco family and seeding love your way. XOXO
A beautiful post. A difficult spot. Sending love!
The heart and spirit feel what neuroscience cannot even begin to speculate. Your words are eloquent and profound, a true reflection of the depth of your sadness and scratchiness. Life gives no easy answers, and no matter what you decide, you will do so with love for both of your parents in mind. Keeping you and Matt close in thought and Prayer.
Love and prayers to all – keep your faith
Though I didn’t know your dad, your mom is an amazing woman who will forever hold a special place in my heart. I lost my mom to cancer in 2012, she and my dad were married almost 50 years at the time of her death. We all were at her bedside when she passed, and my dad held her hand while she drew her last breath. In the time that’s passed since her death, my dad has been gradually showing the signs and symptoms of dementia, and losing memories of their lives together, a life he cherished more than anything else in this world. And while we are nowhere near the level of cognitive loss of sweet Kathy, I totally understand the “scratchiness” of the situation. I pray that you find a solution that brings you peace of mind and heart.
Hi Joey
I’m your cousin Pammy from Chicago. I am so very sorry about your dad. My heart aches for you and Matt. Your dad was my all time favorite cousin. I’ve only met you and Matt one or twice. One time at my wedding here in Chicago and another when we stopped in Charleston on our way home from a road trip at your grand parents house. But I spent many of my childhood vacations in Charleston and have many great memories of your dad and your grand parents. I was the ‘baby’ cousin (10 yrs younger than your dad. But he always was sure to pay attention to me when we were there. Many times he would put me in the basket of his bike and drive me around Charleston. Sometimes we’d go to the A and W on the corner or he’d take me with him to get a haircut. Whatever we did he always made me feel loved.
I’m sorry we don’t know each other well. But if it’s ok I’d like to follow your Blog and Facebook to at least try and keep in touch. I hope it’s ok.
I know your visit with your mom will be hard. I wish I had some words of wisdom to help you through this.
My heart is broken about your dad and I will miss him forever.
xoxo
Pammy
Thinking of you and Matt. Jeff went through a similar situation with his Mom. His Dad passed first and although we did tell his Mom and had a simple little ceremony at the nursing home to honor his Dad, his Mom didn’t ever remember that Daniel was gone. Maybe in some ways that was best for her heart. I hope your Mom feels better soon but shingles can be so painful. Keeping your family in my prayers.
Beautifully written. Love you guys and thinking of you always.
My mother also has FTD. I read your blog because your mom is farther along and I try to prepare for what is coming. My father died last summer. My mom ask where he is multiple times a day. I have to retell her over and over and over that he died. No we can’t go to the grave. My sister donated his body to science without asking any of us. No she can’t be buried by him some day. I’d say the only “good” thing about this disease is that mom never has been sad about dad dying. She lost the ability to feel compassion, sadness or empathy with FTD. My parents were inseparable. They even wore matching clothes. I’m not sure how mom would have ever lived after my dad died because he was her whole world. For that reason only, I’m thankful for this horrible disease. No matter how many times she ask for him and how many times I tell her he died, she never cries or feels sad. Its heart wrenching for all of us, especially my children who are 11 & 16 to have to tell her over and over their grandfather is dead. But we just do it, like all the other things we do that breaks our hearts. FTD is much worse on the family then it is on the person. Mom is very happy and only in the moment.
My advice, don’t worry so much about telling your mom. It is much harder on you then it is on her.