Who Am I Now That She’s Gone?

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There are a lot of similarities between a small child and someone living with dementia. Specifically, frontotemporal degeneration. I remember so many of my mom’s odd quirks. Once, she poured her Coke into her glass of red wine. She drank it, much to my dismay. My toddler did something similar recently. She poured water into a bowl of hard boiled eggs then she mixed it around and ate it. I immediately thought of my mom. I can’t remember if I laughed or felt sad. Her disease caused her to mentally and emotionally regress… a real life Benjamin Button. I always thought having a young child would be, in some ways, easier than having a mother with dementia. In some ways it is: there’s so much more joy, more laughter, fewer tears. My toddler is also considerably lighter than my mother, and when she is upset or angry, I can actually pick her up and hold her… or relocate her. Something I wasn’t exactly able to do with mom (remember those times with her priest?). Lately though, I have been missing my mom; missing something about her… I can’t quite put my finger on the what. Maybe just her presence. Her scent…. I don’t know. I lost my mom, really, when I was in my 20s… I became the parent and she became the child. Before that, I was living in another city thousands of miles from home. I feel guilty about that. Maybe if I had stayed in Arizona, maybe I would have had more of those moments… precious moments that would have stuck with me, helped shape me into someone better that who I became. Instead, my memories are blurry… sometimes I’ll hear something or get a whiff of something and it’ll transport me to a particular time or place… but they’re few and far between. And sometimes I’ll dream about her. Those are the sweetest nights. I wish she came to me more often.

And then there are times when I can’t feel her at all. The loneliness is palpable.

I thought I would be relieved when my mom died. I was in most ways. I was glad she was no longer suffering in a broken down body. I was glad to put that chapter behind me and focus on my baby. I thought the hurt would fade away, too. Time does some neat tricks when it wants to, and frankly, I lost my mom a long time ago. But what I’m learning is that this kind of loss sticks with you. I know it has changed me. And I don’t know if it’s for the better. The final years were incredibly brutal and how one recovers from such a trauma is beyond me. To wallow in it would be selfish and indulgent, though there are days where I wish I could stew in it. So I try to keep going. I hate when things become stagnant. When that happens I desperately seek change. Is this blog, is the work that I do to share our story stagnant? I mean what else is there to say? Is it — this — the anchor holding me down or the means to truly let go. I have no idea what any of it means or if it means anything at all. I guess the truth is I don’t know who I am anymore now that she is gone.

That’s a little lonely, too.

 

Dear Rose,

Dear Rose,

I hope this note finds you well this fine Wednesday. Hopefully I’ve had a good day today so we can focus on this article/letter I’ve written. I started this thing last night…….. and so you know, I want to go on Facebook, but instead I’ve decided to say thank you for helping me understand myself a little more. You’ve given me an opportunity to safely confront my fears—my biggest fear being that I’ll die alone in some state hospital (yes, I tend to go overboard in the detail department and yes, my sheets are urine stained and it smells like feces). While I don’t think I’ve exactly overcome that fear, I think I’m getting to be much better at calming myself down and not taking that giant leap into a non-existent future………….. I go from 0 to 270 mph in a nano-second.

My fear of being alone, I suppose, stems from my growing up an only child—away from family, never really feeling like I belonged to a particular tribe, and now having one parent who is not a parent at all but a child, and another parent whose energy and efforts goes towards his sick wife—not his daughter. I know I’m being selfish about that, but sometimes I just miss my dad. I wish we could have lunch or just hang out, go to a movie. I don’t know.

So there are days when I just sit on my couch feeling very much alone. Other days, I wish I could go home…. well, to a home that doesn’t really exist anymore; a place where my mom and I could hang out or maybe the three of us go to dinner or lunch or whatever it is families do. My fear of dying alone and loneliness is something that shadows me. I think about it when I drive into work….. what if someone hits me. What will my dad do without me…… he doesn’t deserve that much loss. What if my plane crashes en route to Bangkok? What if I’m the last woman standing with no family to say goodbye to me as I take my last breath…………………………

Maybe I’m just numb to the idea of it trailing behind me. I have gotten better, but it’s still there.

You look at me and smile a very warm and comforting smile. You tell me in your soothing voice that where I am is exactly where I’m supposed to be. Thing is, I have no idea if I’ll truly accept the idea that where I am today is exactly where I am supposed to be. I do recite that line to myself and I have enjoyed more moments in the present (another concept or state of mind that often befuddles me) because of our gestalt talks. That sort of rhymes.

I like you Rose very much. I like that you push me to go to places in my personal history that cause me to lose my breath, to cry, to ponder, to question my actions, to hold myself accountable, to step up, to face reality—especially knowing that reality is not always my favorite place to visit. The present moment has always been a vexing place to visit……………………….

As a child, I would sit and stare out the window of my 3rd grade classroom Mrs. Toby would ramble about something silly—subtraction most likely, a skill that took me a while to get………… frankly, borrowing from the tens or hundreds is dumb—and I would stare at the field wishing that I could be taken away to another planet. Now that I’m here in Phoenix, I’m forced to live in reality. I think I like it so far. It’s strange. But perhaps it’s finally starting to suit me…………………………………

So, the point of this exercise is really to confront my other fear……………….    ……… that I am a terrible writer. That I have no talent and  anyone who may actually say something positive about my writing abilities is just being nice because they feel sorry for me.

Yep. I am really my own worst enemy because it prevents me from accomplishing the one thing I’d really LOVE to accomplish………………….. getting published in a national woman’s magazine. To share my story with the world beyond this blog.

So Rose, you wanted to see what I could write. I know I said I would write some attempt at a pitch letter to a national magazines—something that I do believe will give me great professional satisfaction should it actually get picked up (but there’s that voice inside my head going off)—but I’m not sure what the story is. Yes, my mom is the defining force in my life. The blog. My Demented Mom. The process of writing a blog to chronicle her disease/capture any memories that I might hopefully one day want to reflect upon? A changing dynamic—a tale as old as time: children who become parents and parents who spit on the floor at Target? What’s my story? I’m not even sure. I’m not even sure why a) I think I lack talent or b) I have to have that one national piece to justify my existence is a writer. The pitch letter. Ugh. Well here is how my process starts………….

Dear Editor,

And I freeze. Can’t get the words out. What do I want to say? Hand hurts. Better stop. Don’t want to injure self. Um…. well my mom is sick and I want to share my story. Because writing is good and using my words makes me feel better. She spits at church and I hate this disease. It sucks. And stuff. And like she one time pushed me down to run over to the priest. And she spits at Target. And in church and I over sanitize her hands I think with the hand sanitizer stuff. And she backwashed into the cup holding the blood of Christ. Wait, what was my point. My name is Kathy and my mom is one of 5 million Adults dying from dementia. It’s year 5 and this is my story…..

I’ll keep working on that pitch letter, Rose.

Here’s to getting past, “Um.”

>>Flickr image from Mrsraggle

Mom? Are You There? A Story of the Grotesque….

One of the most striking things about my mom’s disease is her inability to understand emotion, especially the most obvious kind — sadness.
After coming to terms with my past in New York Sunday morning, I drove to my mom’s house in tears to take her to church.

When feeling incredibly depressed, my instinct, mind you, is to avoid God and sort of house of worship at all costs. Seriously. My salvation is more spiritual in nature…. I’m more of the watch-romantic-comedies-and-eat-lots-of-pizza-and-drink-wine school of thought.

That, and I have a theory that humanity is nothing more than a telenovela for God. I wonder if he TiVo’s my life?

OK. The backstory.
It was poetic. A brief reunion that seemed promising. Hearts had changed, feelings were still there and incredibly strong. I told only a few people and it was my When Harry Met Sally moment. Was my happy ending really in sight? I wanted to jump down the rabbit hole with this man. In fact, I had decided to take the plunge — to follow Alice  in Wonderland and see where I would end up.
I took the red pill.
And then I was at my most grotesque.
The funny thing about my mom and her disease, which I am more convinced is Vascular dementia or Multi-infarct dementia, is that she laughs and cries at the most bizarre, fucked up things. When she sees her reflections, she goes from laughter to tears. When we get into my car and Daft Punk or Linkin Park is on, she laughs and  claps her

hands in delight. “Around the World” can have that effect, I suppose.

So on Sunday as I sat in church, overwhelmed and unable to see beyond my hurt, I placed my head on my head on her shoulder and wept. She didn’t react. She didn’t respond to my quiet sobs with consoling words. She sat there reciting the days of the week: Lunes, Martes, Miercoles, Jueves, Viernes… Doctor Andres viene el Sabado! My mom can’t just name a day, she now has to go through the entire week to find the right day. In this case, the day Father Andres would come to the house for lunch. I just wanted my mom to understand and to see that I was in a world of hurt. I wanted her to take pity on me. I looked up at her again and nothing. Not a single physical response. Not a crinkle in her forehead. Not a look of sadness or sympathy for her daughter. And as the tears streamed down my face in the middle of the priest’s monologue about Christmas, I looked into her eyes and told her I was sad.
She didn’t understand. Lunes, Martes, Miercoles, Jueves, Viernes, Sabado, Domingo. Vas a venir el Domingo para la misa?

Yes. I’ll be here next Sunday for church.
She smiled. Satisfied. Now on to other pressing matters… her birdseed and the priest. Despues de la misa, me lleves al fruita para mis gatos.

I wanted her to know. I wanted a lucid moment where she would sympathize with me. Give me a dose of wisdom. Tell me that it would be OK. That I am not damaged or grotesque. That I am OK. So, I tried to tell her what I was sad about. I thought she might get it. I don’t know, maybe the thick fog that envelops her mind would clear for a second and reveal the woman who used to be. My mom.

She didn’t seem to comprehend what I was telling her — that my ex-husband (that’s how she refers to my ex-boyfriend and knows him only as that) was in town and I am sad about him — then, she asked me about him: Where’s that cute boy who I used to live with. The one in that one place. Where you used to live. Far. When you lived in Ecuador. What happened to him? Where is he? Do you have a new man? Doesn’t he love you anymore?
Doesn’t he love me anymore.
Doesn’t.
He.
Love.
Me.
Anymore.
Words.
Eviscerate.
Rinse.
Repeat.
Tears.
Love.
Me.
Vomit.
Please.
Love.
Me.
KATHY RITCHIE is feeling a touch grotesque today.