A Portrait of Dementia

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Winter 2009

It all started when she accused me, in so many words, of stealing a box of wheat pennies. She told me that “whoever stole my pennies is going to be haunted for the rest of their lives,” and that she put a curse on “that person.”

My favorite was when she said, “he will never sleep well after what he did to me.” She gave the person a gender. I was the only male who had access to her room.

My grandma was so sure that I had stolen her pennies, the level of certainty was mind-boggling. We all have little instances where we are so certain that somebody did something against us based on facts and history and whatnot … but to be so certain that a member of your family stole something without any discernable proof was cause for concern.

I always kind of admired my fowl-mouthed Italian Grandma for being so certain in her actions. She always possessed this level of certainty that bordered on pathological, but this, this was different.

Something had changed.

She was threatening me, yelling at me, accusing me of the unthinkable. She was accusing me, the favorite of the family, the grandchild who could do no wrong, her own personal Knight in Shining Armor of stealing.

I was angry. I hated her.

I didn’t know what was happening.

 

Summer 2009

I would wake up in the morning and I listen for familiar sounds: birds chirping and cuckooing outside my bedroom window, the howling spring winds coming off the Hudson River that rattle the telephone wires, the gravelly hum of cars driving up and down the street. Those sounds comforted me.

That and Nat King Cole.

That’s how I knew grandma was alive.

Every morning, when she would wake up, she would shuffle downstairs, put on her CD player, and blast Nat King Cole while making herself a bowl of oatmeal.

Lately, everything was different. The mornings grew quiet. No sounds of grandma stirring at all; no sounds of stubby feet shuffling to the bathroom we share on the 3rd floor of our house, no grunting or growling in disgust at everything and anything, no Nat King Cole or Michael Bublé.

I would walk by her bedroom door and listen to make sure she was still breathing.

The Price is Right. Drew Carey. She’s alive, I thought. Maybe.

Sometimes it noon would creep in and she hadn’t emerged yet from her bedroom. I finally knock on her door.

“Steveeeeenn?”

“You alive?” I’d ask.

“Yous can’t wait for me to die, huh?” she’d say, her gums flapping in the wind.

“Oh stop, I get worried that I haven’t heard you,” I’d say as I opened the door.

Her head was always so plastered to the pillow, like she’s become a part of it. Her face smushed from laying down all night and she’d resemble a shar pei puppy with all the buttery rolls and wrinkles.

164

 

Spring 2010

She was spending more and more time in bed. If she had her way, she probably would have stayed in bed all day.

I asked to use her car — mine was in the shop again – to go to the gym. She couldn’t drive anymore. Or at least, we didn’t want her to drive anymore.

I would pinch her cheeks; she liked that recently. She was becoming slightly less mean, more malleable, more apathetic.

I always told her that I would take her to WalMart, her favorite store. She used to go there at least three times a week, back when she could drive herself. Now she relied on me. That was deal. The family would give me her car if I took care of her and was her professional chauffer. That was always the plan anyway: Grandma had decided when she bought her car in 2006 that it would one day become mine if I wanted it.

She never banked on it happening this way.

I always convinced her to hop on an electric shopping cart, because she couldn’t hobble around Wally World anymore. Every time she got on, she’d act like she’d never been on one before, and when she pressed down on the handle, it would jerk forward and come to a crashing halt when she would inevitably get too nervous.

Stop and go. Stop and go.

One inch forward. Stagnation.

Reverse. Back up. Jerk forward.

That was her life now.

“Yous just wanna see me dead,” she’d say without fail when I would snicker at her inability to drive properly.

“No, Gram, I just want to not be in WalMart any longer than I need to be.” #PeopleofWalmart.com.

After a few minutes of her nearly running down small children and bashing into the electric doors, she would get a handle on it. Somewhat. It was great when she stopped to check out the candy aisle and did it so short that the guy behind her slammed into her.

It was like watching a geriatric version of Mario Kart.

As we shopped, she had a “list” to check off, something we’d allow her because it preserved a sense of normalcy:

  1. Toilet paper
  2. Almond Joys
  3. New broom

When we reached the cleaning products aisle, I showed her the options.

“Are you crazy?! I ain’t paying no ten dollars for a broom! I’m going to the dollar store. Fuckers.”

“Ok. We’ll go to the dollar store.” We continued on. Every time we rounded the corner into a new aisle, a look of sheer panic washed over her, and she apologized to passersby, saying she’d never been on one of these “things” before.

She always said, “I hope nobody sees me in this thing and thinks I’m old.”

To which I would reply, “Well, I doubt they’ll think you’re 20!”

“Maybe 30…” She smiled.

“Or 84…?” I retorted.

Then she’d stop the scooter and gaze up at me and say, “You’re a fuck.”

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Summer 2010

My mom was in the kitchen on the phone.

She turned to me and said: “Grandma missed her bus home from Foxwood.”

“What?”

She was on the phone with a nice woman, Ella. She put her hand to the mouthpiece, covering it, and said “She’s lucky I was upstairs, because I wasn’t going to answer the phone. All I heard was the some woman on the answering machine going: please call me, it’s about your mother. And I was like ‘ah fuck! she had a heart attack and now I have to drive all the way up to Foxwood!'”

Grandma missed the bus once before and she had to use all of her casino points to charter a limousine to take her home, and she ranted and raved for days, months, years about the “fucks” who left her and how they were just trying to “get one over on her.”

When she got off the phone I asked, “So what happened?”

“She had to go the bathroom, and told the driver to wait for her, but when she came back, the bus had left. That’s when Ella called and said ‘your mother’s quite a feisty woman!'”

“So now what? We’re driving to Foxwood?”

“No, she’s going to get a bus to New Rochelle, and that’s where we’ll pick her up.”

When we got to NewRo, we pulled up to the bus stop and saw grandma with her cane hobbling across the street. She looked like a lost puppy, worried sick. Almost innocent, like a newborn baby. She was on the arm of a nice black woman who was helping her cross the street.

“Gram,” I said, hopping out of the car to her aid.

“That’s my grandson,” she whimpered to the woman. I open the car door for her, and she chucks her purse and gambling bag in the car, like a raging bullet. She begins to crawl in like a bear, her hind legs rigidly straight, and her bum out like Winnie The Pooh.

Once she was safe inside my mom’s car, the next words out of her mouth were: “THOSE F*CKS LEFT ME! Yous don’t know, yous don’t know what I’ve been through. F*CK!”

I tried not to laugh, but the snaggle-toothed grin, where her lower jaw extended out over the rest of her face, and her tiny narrowed eyes had me nearly rolling on the asphalt.

She started to scream: “I CAN’T FUCKIN’ BELIEVE IT! I’m so fuckin’ aggrivadit and I don’t have my FUCKIN’ blood pressure medicine. Theys want me to have a heart attack!”

My mom had her hand on her head, which rested against the window, like oh-dear-God-here-we-go-again.

“Gram, what happened?” I asked.

“I had to use the toilet, and when I got out, the FUCK! was gone! I missed him by ten minutes! Then I hadda get on the other bus to bring me here, and the fuckin’ bus driver was an Asian and was like ‘you no come on heah, you pay me twenty-fo dollah’,” she said, doing her best racist immitation of an Asian woman.”And then when we got here I says, ‘I hope my daughter didn’t forget about me,’ because I didn’t see yous guys. Then when I saw Steven’s face it was like I saw Heaven!”

“Me too, Gram. When I saw your face, the heavens open up to me.”

She laughed. “But yous don’t know what I been through. Yous just don’t know.” She repeated the story at least four or fives times, asking us if we knew what had happened. And then she told us about the nice ‘colored’ woman who helped her cross the street.

 

January 2011

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It had become a regular routine to take grandma out for lunch and a movie.

She never remembered the movie, but she enjoyed it in the moment.

First, we’d hit up Panera bread for a little lunch; I got her a bowl of macaroni and cheese (her favorite), and a Panini. She would rave about the mac and cheese and tell me stories of how she used to make it with her mother when she was younger. I mouthed the words along with her, since it was the same story every week.

That day, we headed to the movie theatre for an afternoon showing of “True Grit,” which I had already seen, but knew she’d love since she was always plopped down on the couch watching old westerns on TCM.

While I waited in line to buy the tickets, she went inside to use the bathroom. I always forced her to go to the bathroom, otherwise she was likely to have an accident. A big accident. An unmentionable type of accident. (Now, reader, this is what we like to call “foreshadowing” in literature.) After purchasing our tickets I walked inside to find G-Money plopped down on a bench outside of the Ladies Room.

“Did you go to the bathroom, Gram?” I asked.

“NO!” she said, rather loudly.

“Get in the bathroom right now!”

“Shut up, willya! I don’t hafta go,” she exclaimed.

“GO!”

“Eh, shut up, ya prick.”

Ok. Fine. I couldn’t force an 84 year old woman into the bathroom without looking like either:

  1.  An abusive grandson or
  2. A raper of the elderly.

As we sat and watched the previews, she would ask, “What the hell is this? Is this the movie?”

“No, Gram. this is a preview.”

“Oh. What the hell are we seeing?”

“True Grit.”

“Is it good?”

Repeat x 10 until the movie began.

As Maddy Ross narrated how her father was shot, which set up the film, and grandma grabbed my hand. I looked over to her and she had a panic-stricken look across her face. She scooted up in her seat and looked as if she was having a heart attack.

“Gram, what’s wrong?!”

“I’m shitting! It’s coming out! Oh dear!”

“Are you KIDDING?!”

“No! Oh my lord! I’m shitting!!”

I helped her out of her chair and an explosion of smell smacks me upside the head. We shuffled down the aisle and across the hall to the bathroom.

I waited outside, and all I could hear was, “Steven! Are you there?”

“Yeah, Gram…how is it?”

“Oh, it’s bad! There’s shit everywhere! I need new pants!”

At this point, the stench of diarrhea travelled out of the bathroom and into the hallway of the movie theater. I knew I had to go back into True Grit (the theater still smelled a bit), grab our stuff, which we had left in a mad dash for the toilet, and go to WalMart to buy her a new pair of pants.

When I return with a new pair of pants, I checked to see if the coast is clear, ran in, and slipped them underneath the stall she was crouching in. That’s when I saw the smear on the floor by her feet. She had her boots off next to her, which were decorated with her lunch. Her socks were off and all I could see were her dangling feet.

The smell made me faint, so I walk out. A tall voluptuous black woman was walking in. She stopped at the door to make sure she had entered the right bathroom. The look on her face screamed, “PERVERT”, but I assured her that my ailing grandmother was sick in a stall.

She walked inside, and all I heard is, “Steven, are you still there?! Oh Steven! I can’t believe this is happening to me!” Then she started to scream, “Lord, why is this is happening to me!”

Then I heard the black woman, “Honey, you can come back in and take care of her.”

“I don’t want to flush the toilet…” she wailed. “There’s so much in here…”

I handed her piles of wet paper towels underneath the stall so she could clean off her legs and her feet and her boots, and she plopped them into the toilet.

She put on her new pants, and pushed her old ones under the floor. They’re soaked to the bone with excrement, and I felt like I’d fallen into a baby’s diaper.

When she finally shuffled out of the stall, I took a look around: feces smeared on the floor, streaks all over the toilet bowl, and a mountain of toilet paper and paper towels piled high above the seat of the brown-splattered bowl.

“I hate to leave it like that, oh lord why is this happening to me. FUCK!!!!” she hisses. Her face was bright red.

I tell her that she has to shower when she gets home, and she says, “Of course!”

When we got home she had forgotten all about what happened at the movie theater and when I DEMANDED she shower, she said, “Go to hell, I don’t need to shower ya bastard!”

 

Fall 2011

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She was becoming more and more despondent in daily interactions.

Gone were the days of the spirited argument for the sake of arguing.

She just wanted to rest.

That didn’t stop her, however, from waking in the middle of the night and wandering around the house. She would shuffle down the stairs and move around the kitchen. Sometimes she would go up and down the stairs three, four, five times a night, forgetting that she had just gone downstairs.

She was waking up earlier than she usually did, and me and my mom had to start listening for her as early 5am, because she would be downstairs making cereal with raw egg whites (I always kept liquid egg whites for healthy omelets and the container resembles that of a milk carton) or she would start to make oatmeal and forget that the oven was on.

She was aging and quickly.

Gone were the days when she was wrinkle-free; her flaw-free complexion was changing with the seasons and she was looking weathered.

That was when we discovered her irregular heartbeat. The new meds she was one were quickening her heartbeat, keeping her awake, causing her to feel a fundamental change in her body.

The difference was that now she couldn’t vocalize her pain.

I spent most of the nights with her in the hospital, praying with her, for her. I wasn’t even sure where I stood with God, but I tried to reason with him, barter with him, beg him not to take her, not yet.

We’d spend hours recanting her famous meatball recipe, and I’d ask her to sing for me because she had the most beautiful voice, like Rosemary Clooney. She even had a recording contract once upon a different lifetime.

When she was released to the hospital, they sent her to a nursing home. I followed closely behind her in my car, ready to take her hand when she was wheeled to her new home.

The corridors were filled with cripples and invalids, a portrait of neglected souls. Some paced back and forth, muttering small nothings to nobody. Some were mentally paralyzed, frozen in chairs, unable to say anything at all. All of them were old, very old, almost caricatures of the old crones and creepy old men you’d expect to find in bone-chilling Brothers Grimm fairytales, the ones that haunt small children and make them fear the aging process.

They were all lost souls in hospital gowns and fuzzy robes, and I felt my grandma squeeze my hand as they wheeled her into her new room.

She had tears in her eyes. “Promise me you won’t leave me?” she begged.

By the end of that day, my mom had check her out and brought her home.

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January 2012

Grandma was now residing in the living room, with a gate at the staircase so she couldn’t climb back up to her old room. My mom and aunts had decided that she deserved to live out the rest of her life at home, surrounded by people and things that felt familiar to her.

 

Spring 2012

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We hired an aide to help her, to clean her, change her diapers.

Like a baby, she needed round-the-clock care, a constant grannysitter.

She still knew who I was, but was beginning to forget everyone else not in her immediate world. I was the only grandchild she could still call by name.

 

March 2014

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It’s been over five years, and she just celebrated her 87th birthday this past month. She no longer knows me by name, just by feeling. When I go over my mom’s to visit her, she smiles because she knows I’m someone important.

I often think back to how it all started, with those damn pennies, and think: what happens when you no longer fit into the life you spent years crafting? What happens when memories, names, feelings, inclinations all disappear? What happens when the very foundation of who we are is gone?

What then?

Who are we?

Who is she?

The woman with the best meatballs outside of Italy, the best singing voice, the loudest laugh and the truck driver mouth?

 

21 thoughts on “A Portrait of Dementia

  1. That was a beautiful piece of writing. I had gone through dementia with my mother. It was a long and hard battle. She had to live out her days in a nursing home, the second one since the first one she was kicked out of.
    Susanne

    • Thank you so much, Susanne.

      To be honest, I was really hesitant to post this. I thought maybe it was too flip or didn’t capture the real emotion behind the last five years. But then I realized this was MY experience. And obviously there is SO much more to it, but yeah…I’m rambling now.

      Sorry to hear about your mom. It’s such a difficult and confusing thing to experience…it’s very hard to witness, and everyone’s experience is different from what I gather. We’re so lucky my grandma is docile and complacent.

  2. Fuck I love your writing. It makes me happy and sad at the same time. I don’t think there’s a word for that. Ha-ad? Nope. It just brings feeling. And some feelings can’t be boxed, I guess. (those pesky, bloody feelings) Especially when it concerns grandparents. They bring out in us feelings that just don’t make much sense. Thanks for sharing, mate.

    • Holy fuck dude. Seriously? Your comment is giving ME all the feelings! Thanks, man! Really appreciate that, especially coming from someone whose writing I admire for being so raw and honest and REAL. I was worried that the writing was too … old school me? (Which you wouldn’t know, I realize haha.) I guess it wasn’t as bad as I thought.

      Thanks again for the awesome comment dude!

      • I’m sure that old school you still has some place in today you. Old emotions are stronger than new thoughts. If you can stay true as possible to what was, and how it was – what more can you do? (Sorry if this comment makes no sense; I’m as high as a kite.)

  3. Your grandmother is sure a wonderful piece of work. She may not know your name, but she knows how much you love her. My grandmother was a real corker, too. She became very religious in her later years, but once her dementia hit she said whatever came to mind. You would have thought she was a truck driver, too!!
    I’ll bet you have some other great stories about her.

    • Hahaha…colorful is definitely the correct adjective to describe her.

      It’s amazing how many people have family members who have suffered from this! Your grandma sounds a lot like mine! Even now her trucker mouth emerges when least expected and it’s pretty hilarious. Those are the moments that I love because I get confirmation that she’s still in there.

      I have SO many stories to tell. Probably the most important was that she could have been a professional singer and all the events that didn’t lead her down that path.

      • My grandmother passed away two years ago at 98, but when I would visit her, she would always tell me to remember to keep my legs closed as I was leaving. I can only imagine the “advice” she gave to members of her church when they dropped in! She also insisted that she was having affairs with droves of male residents (most were immobile) at the nursing home.

        You should write her biography. I love reading about the interesting lives of others whether they’re famous, or not. 🙂

        • 98! Wow! God bless her! I only wish I would be able to live such a long life. I guess in the grand scheme, our grandma’s did live long, fulfilling lives of their own and they will always live on in memories! That legs comment is hilarious! When I was growing up, she always used to tell me that “most girls these days are pigs” and that I needed to marry a “good Catholic girl, preferably Italian.” When I’d joke about bringing home a black jewish girl, she would say, “You’re disgusting.” Good thing she isn’t all there enough to see me bringing home guys now!

          I’ve thought about fictionalizing her story (biography/memoir, while fun for shorter pieces, isn’t really my thing) for a YA novel…I just need to be inspired to write it! I have so many ideas though.

          • For as religious as my grandmother was, she was thankfully very liberal. (Not that one can’t be religious and liberal–it just seems that the two often don’t meld.) My cousin is gay and she was, thankfully, always very inclusive with his partner.

            It sounds like we’ve both been very lucky in the grandmother department. 🙂

  4. Steven, this was beautiful. My grandmother is suffering from the beginning stages of dementia as well, but I’m shielded from so much of it since I spent so much time away. It’s hard when you don’t see the daily decline in a way – every time I go home, I’ve lost more of her. I love the hilarity in your stories, I can hear you telling them to me in person when I read it, and I laughed to breathlessness and tears through most of this post. The end was very touching…lots of love from Beirut! Keep up the good work.

    • Awww you never told me about your grandma, Melissa!! I’m so sorry to hear that. It’s hard even if you are around to see it. I don’t go over to my mom’s much anymore because of time restraints, but when I do, it seems Cheddah gets a little more lost, a little more empty. At least she’s at peace. Or seems to be, anyway.

      Thanks love! ❤

  5. Steven,

    As I am sure you are aware we are having Mary, Connie’s sister, come live with us later this spring. This was not an easy decision, but as most things in life that are not easy are – it is the right one. Mary is no where near the condition of Aunt Connie. Mary is still mobile, in command of her functions and while her memory fades in strange water color patterns it is still vibrant.

    She is still Mary.

    She’s still a vibrant Sicilian woman who has lived with more pain of loss than any one person deserves. First, her beloved husband Charlie, then her son Joe (a stroke took the Joe she knew away) and then the loss of a subsequent husband and sadly now given her age (93) most of her immediate family and friends.

    Like you and your family, we cannot simply see Mary not live with anyone but family. We do it not because it is easy – but because it is right. There may come a time when it is in her best interest to live in a place that can meet her medical needs, but for now that is not the case.

    I true struggle with my faith. I tend to see the evidence that if there ever was a God he’s now at best an absentee landlord, but if there is a God and he is just and merciful, I pray that He and rewards you and yours for the love, and more importantly, the respect you have shown to Connie.

    Thank you for opening up this chapter of your life. Though I know Connie more through family stories and the memories of others, I feel its safe to say that she’d let loose with, “My grandson, didn’t I tell youse all he had fuckin’ talent?” if she read this.

    With respect,

    Robin

    • Hey Robin!

      Thanks for that…I really appreciate that. Means a lot!

      Aunt Mary is one admirable woman, let me tell you. She’s SUCH an inspiration, and I’ve been talking with Emily a lot and it seems that Mary’s in really great spirits, and that says a lot about her character. I only hope that when I’m her age, I have half of her spirit!

      As you know, it hasn’t always been easy with Connie, but when all is said and done, I love her more than anything, and I cherish all those moments we shared when she was still Connie, before she became the ghost shell she is now. She was always very proud of me, and I’m thankful for that!

      I’ll see you guys soon 🙂

  6. Ow… Ow, this hurt. Your writing is amazing as always and I can only guess what your family is going through at the moment but the emotion you convey through every single word, every single sentence is just heartbreaking and almost painful to read. I especially loved the last few questions- really, beautifully done.
    Phoenixflames12 x
    P.S Yes, yes you are a heart-breaker, congratulations!

    • AwwWWwww! Thank you so much. You’re quickly becoming my favorite person!

      Yeah, this piece is hard for me to read. Since I posted this piece, my grandma hasn’t gotten worse and no longer knows who I am. It’s been very hard, very bitter pill to swallow.

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