On the road in the crumbling neighborhood a yellow plastic bag crinkles as the wind carries it down the street. It swirls in circles midair, the bright color contrasts against the dark grey sky from the thunderstorm slowly turning into night. The bag snags on the metal base of a mailbox, flickering like a lit match in front of the house with the hanging flowerpots. The Mums sway in the wind, and from inside the house, with its suede couches and large backed T.V., the flowers cast shadows on Grammy’s face. Dinner was finished hours ago, so the only light still on was the dull yellow glow in the living room, and the flickering pixels from the episode of M*A*S*H relaying on the T.V. screen.
In the center of the living room, atop the stained carpet I, at four years old, sit on a wooden stool. Grammy runs her fingers through my hair, making a tisking noise.
“You need a hair cut.”
I can’t remember now if she actually cut my hair, or pretended to with her fingers. I can’t remember if pale blonde rings laced the living room floor. Probably not – my mom points out – Grammy wouldn’t have cut my hair in the living room because it would’ve been easier to clean up off the kitchen tile.
But mom doesn’t remember either.
Dementia involves the rapid slipping away of memories, like an avalanche of colors and concepts and people tumbling out of your mouth at the wrong time. The aftermath is a loss of social skills, impaired judgment, hallucinations, agitation, loss of mobility, and a laundry list of other scary words that I never thought would apply to my Grammy, because we never think we’ll forget the recipe to our family’s favorite Christmas ham until we do. We never think our names will be forgotten until they are.
It’s probably important to note that dementia is not a disease. Dementia is a condition caused by a disease. It’s a word used to describe a group of symptoms that affect memory and thinking as a result of diseases like Alzheimer’s or vascular dementia. Also, side note, that whole dramatic Grey’s Anatomy T.V. show rendition of Alzheimer’s is pretty damn inaccurate when you get to the nitty gritty of it. Not to shit on someone’s viewing experience, I’m just saying no one with Alzheimer’s just loses their memory while holding on to their motor skills and ability to keep up with personal hygiene.
I am not a scientist or a medical professional, but I know these diseases can be caused by several things; two of which are damage to nerve cells in the brain and, of course, genetics. So it’s like a cause and effect sort of thing. Damaged brain cells cause Alzheimer’s and other diseases, which results in the condition of Dementia.
There are five stages to dementia. The first stage is preclinical, or CDR-0. You don’t know you’re brain is progressively getting more and more damaged, and neither does anyone around you. There are no visible symptoms. The second stage, known as CDR-0.5 involves questionable impairment. You may have memory slip-ups, but nothing that would stop you from living your daily life.
But I don’t mean to make light of it – it’s terrifying, and the physical aching in your chest kind of heartbreaking.
“You have to learn to laugh, though.” My neighbor Daria points out. Daria used to volunteer at Arden Courts, an assisted living home in Parma, Ohio that specializes in those suffering from dementia.
“There’s this one lady who would have me wheel her outside, and she would ask you, like, ‘oh honey what’s your name?’
‘Oh it’s Daria.’
‘Oh how old are you?’
‘Well I’m eighteen.’
‘Oh where do you go to school?’
‘I go to school in Akron, I go to Our Lady of the Elms.’
‘Oh well that’s nice.’ And then, ‘Oh, honey what’s your name?’ And you’d do that a couple of times before you’re like; let’s make this interesting. So I started making up identities. That was really fun. I changed my name to Ricky once, and she was like ‘Oh but isn’t that a man’s name?’ and I was like ‘yeah, but they thought I was going to be a boy for the longest time, and my dad didn’t know the sex and he always wanted a son named Ricky. And so I’m Ricky now.’ and she’s like ‘Oh that’s so sweet…honey what’s your name?’ ‘Oh, well, you know what, now it’s Tiffany.’”
“Daria!” I laugh.
“But I don’t know,” she shrugs. “Like I said, it’s kind of sad unless you have a good attitude about it. And we’re learning now that [people with dementia] need a different type of activity that reverts back to childhood. Like this Italian lady there, she worked in a kind of hospice center where she would fold laundry all day for twenty, thirty years. So if she was folding things, she was occupied, and you could carry out a conversation with her, because that’s what was reverting back.”
“Really?” My inflection turns up.
“Oh yeah, and coloring,” she adds. “Coloring is a big thing. Because of the motor skill involved, and coloring is one of the first things you learn as a child. So coloring keeps them occupied for a very long time.”
I make a mental note of that, and thank Daria for talking to me.
The part of Dementia that really gets me is the preclinical stage – it could be forming in my brain right now and I wouldn’t know it. Or if not in my brain then my mom’s or my aunt’s brain. And since it’s genetic the trail of memories left behind will probably only grow longer. 1 in 3 elderly persons will die with a dementia related disease, so how much longer until that number doubles or triples? Until we’re all doomed to face these diseases one day. This dementia forms in our minds like roots forming beneath the soil.
Since Dementia is the result of several other diseases, they way it affects people is different depending on the person and their disease. My former manager, Jen, watched her grandma die of this, and is now witnessing her father face Alzheimer’s.
“When my dad would go to the doctor they would ask him questions like ‘do you have any children?’” Jen begins. “He once replied, “I have two cats, a still born baby boy, and a daughter, Jennifer.” Which isn’t a normal response to that question. Now when he is asked questions he has a hard time staying on topic. He might pick one work out of the question and talk about a memory that goes with that and we have to bring him back to the topic. For example, what did you eat for dinner last night? He would respond ‘I eat eggs and toast every Wednesday and I go see my mother. She used to ride on Harleys and archery hunt deer.’ In which we have to say. ‘Did you do anything special for dinner last night?’ He would then have a different response of ‘we ate at the Blue Fig for our Wedding Anniversary.’ Both were true memories but he gets lost or confused on the way to the answer of the question.”
It’s like he’s trampling through a forest of memories trying to follow the echoes of dozens of voices. I think of my own Grammy and shiver.
There is an immediate smell of warmth, as if temperate could manifest into something that fills your nostrils like Grammy’s sweet candles burning away in the kitchen.
“Well there she is!” Grammy laughs from her reclining chair. She pushes in the footrest, the metal levers clicking as they fold up. “There’s Teresa! Er-.” Her head twitches, and she is frowning. “Kristin!”
I’m used to the fumbled greeting, so I just grin. “Hi, Grammy!”
“What have you been up to, Miss? – Thanks Cheryl,” she says as mom hands her a plastic bag of magazines and the Click’s grocery store add.
“Oh sure,” Mom chimes, sitting down in the rocking chair next to Grammy. I take the firmly cushioned chair opposite of them, next to the T.V. There are no shadows and dull lights now; her newly refurnished living room lets in the pale afternoon sun, illuminating the dust floating around the room.
“Just school and stuff.” I say.
“And hanging out with friends.” Mom nods and smiles when I look at her.
“Yeah, I’ve been hanging out with Alyssa a lot lately.” I add.
Grammy nods, and turns toward mom, asking her a question, though I don’t remember the answer anymore.
On the wall near me, a long, narrow cloth calendar hangs on the wall. It’s not so much a calendar, but pictures to represent each month, starting with January at the top and December at the bottom. I study it every visit, and now I remember that August, my birthday month, was an orange sailboat on the beach.
Grammy and mom continue to talk, while I try to memorize the passing months.
My eyebrows go up when Grammy calls to me. Her soft lips are curled up in a smile.
“Do you want some cake?”
I nod. “Yeah I do!”
We both stand, and head to the conjoining kitchen. The fridge lights up the dimmed kitchen, revealing the green walls and counter covered with dishes all with different degrees of cleanliness.
Grammy pulls out a plate of strawberry cake with a mushy, bright red filling. Together, we eat cake and watch a lifetime movie, featuring rusty pay phones and black and white characters gliding across the screen.
Crumps tumble from my plate. I glance down, then look up to Grammy, but her eyes are on the screen, and she doesn’t seem to notice.
The third stage of dementia is called CDR-1 and involves a more mild impairment. Your short-term memory is mainly affected during this phase. This is also the stage where you become geographically confused. You’d reach this stage and suddenly have trouble functioning alone outside of their home and other normally comfortable places.
Jennifer, the mother of my closest friend, used to be a caretaker for a woman with dementia.
“The woman I took care of was named Ova,” she tells me. “She was 83 when I started taking care of her. She always needed someone to sit with her and help her walk to the bathroom, kitchen, etc. but she was self-sufficient enough. But one of the first signs of her dementia was when she would have ‘manic’ episodes and would wake up at night and try to move around the house on her own, causing her to hurt herself.
“Her dementia progressed pretty quickly after that, and eventually she was bed-ridden and we had to do everything for her. I spent my nights trying to feed her, changing her adult diapers, and moving her every 2 hours to keep her from getting bedsores. It’s not uncommon when taking care of the elderly but with someone with dementia it was very difficult because I never knew if she would fight me when I tried to touch her and getting her to eat in these times was difficult.”
Daria told me the Arden Courts’ cooks always said feeding the patients was the hardest thing, because they’d forget they ate and then accuse the cooks of denying them food, or try to drink or eat but miss their mouths and not even realize it. Impressed by Jenifer’s strength in handling this, I push forward, wanting to know more.
Exhaustion coats my mom’s face. Her cell phone is clutched in her hand as she rubs her temples. The overhead light is on, but the moon creeps into the kitchen through our half closed blinds. I take a seat near her at the kitchen table.
“What’s going on?”
“Oh it’s Grammy,” Mom sighs. She forces a laugh. One of those if-I-don’t-laugh-I’ll-probably-cry giggles. “Susie and I have been so worried about her falling down those basement steps and she’s just so angry she can’t drive anymore.” Mom sucks in a breath, pushing back pieces of stray hair. “And she will do anything to get what she wants.”
“Wait, what happened?” I ask, curling my legs to my chest.
“Well she calls me and asks me to pick her up because she needs to go to the bank. So I drive over to her house and knock on the door, but no one answers. I ring the bell, call her phone, and I can hear it ringing in the house, but there’s no answer.”
My heart plummets. “Oh, God, did she fall?”
Mom’s eyebrows go up and she forces another laugh. “Well yes, but not in her house.” There isn’t time to respond before she continues. “Finally she calls my cell and tells me she’s already at the bank.”
“Did a neighbor drive her?” I furrow my brow.
“No, she walked.”
I chuckle. “No shit.”
Mom blinks and shakes her head. “So when I take her inside, the teller asks me ‘is this your mom’ and I say it is, and she tells my she fell in the parking lot.”
“Oh Grammy,” my voice crumples as my heart does.
Not long after, following a battle with my mom and aunt to let her drive again, she’d take off down the road, pushing past her daughter, her own mind’s limitations, and any rational reason to stay put. It isn’t until an ambulance arrived that she finally calmed down. In those moments, her mind and thoughts drowning, I feel like my Grammy is really gone. That the strong pillar in our family has melted into the ground.
CDR-2, the fourth stage of Dementia, is when you’ll probably need help taking care of hygiene, and although you’re well enough to do normal tasks, you need to be accompanied. The fourth stage involves more disorientation with time and space. The new check out lady at Click’s? You probably won’t remember who she is. It’s also very difficult to understand where you are on the timeline of established relationships.
Jennifer witnessed Ova’s mental state travel through phase after phase, those roots wrapping around and clutching her brain, melting her to the ground, too.
“When I first started taking care of Ova,” Jennifer continues. “Her lucid periods were more prominent and she loved to tell stories. As time progressed, she would call out for her family and want to share things with them, and we did have to explain quite often that they were gone. It was hard watching her grief over and over, but by far the hardest was when she would call out for her daughter who had passed away at 18. She had gone off to college and was riding her bike off campus when she was hit by a car. Ova had always had a hard time dealing with her passing and the dementia seemed to bring back that pain over and over. This is why dementia always confused me, they say you eventually forget everyone you love, but in Ova’s case all she seemed to remember were the one’s she loved and lost. It was heartbreaking to watch because she was such a quiet, demure person when lucid, and I hated watching such a sweet woman go through the things she did.”
I think of Grammy, calling me by the wrong name and no longer being able to hear my voice correcting her. I think of her trembling with anger as she realized mom had her car keys and that she wasn’t giving them back.
“I’m sure the progression to this point took months but to me it seemed like it changed overnight.” Jennifer continued. “Her lucid periods were prominent when I first started caring for her, and it seemed like one day all lucid thoughts were gone. I took care of her for just over a year, and in the end we had to have 2 people with her at all times because although her physical body was weak, it seemed the dementia made her strong and she would fight us a lot toward the end. I ended up with many bruises and often had food and other things thrown at me during these times.
“I’m not a professional, and I was just a friend helping out another friend to take care of a loved one. I’m grateful that her family had the resources available to keep her at home and in a familiar setting even if she didn’t realize it most of the time. I often wonder how other families who don’t have these resources deal with dementia. Yes there are homes and places that help to take care of our loved ones, but if its scary for us to think of our loved ones in unfamiliar places, think of how scary it is for the one with dementia.”
I take in her words, and my newfound guilt, and thank her for answering my questions.
The final stage of Dementia is CDR-3 or severe impairment. At this point, you cannot function at all without help. Your memories have dissolved under the roots trapping your mind, which also crush your sense of time and geographic location. Function at home is so impaired you have to have assistance. Your disease confiscates your life and you are bound to it.
“Mom,” My cell phone is pressed in between my cheek and my shoulder. “What did Grammy’s house smell like?”
Through the crackling reception I hear, “Why?”
Because I want to remember. Because Grammy isn’t the only one with fleeting memories. Because when we sealed the door to her house and sold it I forgot to memorize the aroma of the place Grammy owned, and the way her bedroom smelled like her perfume.
“Because I forget.” I state.
“Well, toward the end it sometimes smelled like urine…because that’s part of her type of Dementia…loss of bladder control.”
There is a pause, long enough for her words to hit me. I push forward. “What is it that is causing her dementia?” I ask.
“She has extra fluid in the ventricle in the brain that puts pressure on the brain and causes Dementia like symptoms. It’s called NPH, Normal Pressure Hydrocephalus.”
Another lull in the conversation pops up as I’m typing in her words, and fighting with spell check on the word “hydrocephalus.” In the silence, mom speaks.
“It hurts, Kristin. It hurts to think she’s worrying about getting her grandkids off the bus and getting them dinner and they’re 35 and 28.”
A twinge of pain shoots in my chest as my fingers freeze, hovering over the keyboard. “It hurts me, too.”
I have to be honest; I’m conducting a lot of these interviews as a way to learn how to cope with it. There is such a distance between me and the realization that my Grammy is fading away, because my Grammy has always been my Grammy. She was a constant in my life. The one thing that was there for the sole purpose of never changing – you could always put Grammy on emergency contact forms, it was always time to visit her, she was always there. Now when I see her, her eyes are pained and confused and I can feel the pressure in my chest bubbling, wanting to cry out.
Where did you go, Grammy?
At one point Grammy fell in her assisted living home, and her head collided with the wall. Her lip was bust open, and since she’s on blood thinners it wouldn’t clot at the site of the wound. So it kept bleeding and bleeding. Only moments later, it seemed, the whirling lights and piercing sounds of an ambulance cut through the air. It terrified me, seeing her loaded up in the back like that, strapped to a bright yellow gurney. I stood outside where they loaded her and watched the ambulance, still screeching, slam its doors and pull onto the road.
Please come back, Grammy.
“I wish I would’ve been there to fight the doctor.” My cousin Teresa, the one whose identity I’ve been holding in my grandma’s mind, tells me over the phone. “There’s a chance she could’ve lived through the surgery,” Her voice cracks, and through the breaks I can hear the regret as it trembles out. “But I’m not here taking care of her, so it wasn’t my call.”
There was a surgery that could’ve been done to drain the fluid from Grammy’s brain and possibly reverse the dementia, but because of her age it was too risky.
“But I’ll tell you what, she is the biggest busy body, hardest worker you’ll ever meet. ‘All those boys are lazy, the girls work!’ she’d say. And she was such a grandma. She made me stay there until my plate was clean, she cut my bangs in an awkward way, embarrassed me to death.”
It sit up straight. “Wait she cut your hair, like, actually cut it?”
The conversation comes to an end after that, but Teresa reminds me that there are pieces of her we can still hold onto. Grammy didn’t take anyone’s shit, which is why her fight is so strong now. Her refusal to give up is marked by her past of not having a choice but to push forward. I regret not knowing her well enough when she could still remember me, but we would all do well to remember her in this way.
The fall breeze waves over me like an encouraging gesture, telling me to go forward. Today will be a good day for her; I can feel it in my bones. At the front door of Grammy’s assisted living home, I punch in the code that unlocks the door. 0911*.
I pull open the door and walk in. Grammy’s wheel chair is parked in the entryway to the kitchen. Her hair looks flat, and I can tell she’s fallen from her normal perming schedule.
She gasps when she sees me. “Look who it is, I haven’t seen you in ages, Cheryl.”
I don’t bother to remind her that I’m her granddaughter and not my mom. I just crouch down and grab her hand.
“What have you been up to Grammy?”
“Pfft, you’re looking at it.” She shakes her head. “What have you been up to?”
“School work mostly, but hey, Grammy, I got you something.”
From a crinkling plastic bag I pull a Disney princess coloring book and a twenty-four pack of crayons.
“It’s for an art project,” I lie. “Could you help me?”
“Sure,” she shrugs.
Bumping into walls along the way, I wheel her back to her room, where we color in Sleeping Beauty.
“What color should her hair be?” Grammy asks.
“Yellow?” I smile.
For the first time in a long time she’s focused on something other than the constant scenes of the past replaying in her mind like reruns of M*A*S*H. Her favorite colors of fall drift down from the trees outside her window.
Elizabeth Syson wrote an essay about her grandmother’s Alzheimer’s. In it, she wrote a line that made me cry the first time I read it. The words are striking me now, but this time I smile.
You might forget my love, Grammy, but you will never lose it.
I want to tell her this, but instead I help her color in the princess’s dress, joining her in sweet silence.