When My Pop Pop Taught Me How to Face Alzheimer's Disease

2k
2k

194513_10150158545580540_4259971_o (1) I’m 5 years old, sitting cross-legged on the carpet, and beneath an uneven flop of bangs, my forehead scrunches in frustration.

I cannot for the life of me remember where Piglet is hiding.

In front of me lay playing cards, all facedown, concealing two of every “Winnie the Pooh” character. The goal is simple. Find the pairs. Flip two cards over and remember their location so later you can match two Tiggers or two Poohs or two Roos. Whoever finds the most pairs, wins.

My Pop Pop sits across from me. His green sweater vest matches his eyes, and his tan corduroy pants match the sunspots on his head from summers at the Jersey Shore and winters in Florida. He has less hair than most people but more sweetness. Still, he’s not going to let me win.

I’m taking a long time because a mismatch and subsequent loss would put a dent in my 5-year-old ego. Before my forehead permanently wrinkles and a tantrum erupts, my Pop Pop says this:

“It’s OK if you can’t remember.”

Seven years later, I’m sitting in the living room in our home in Hillsborough, New Jersey, when I overhear my mom on the phone.

“Mom, that’s Dad,” she says. “He’s not a stranger. He’s your husband.”

I’m 12, and dementia doesn’t mean anything to me. (Diseases, I’ve found, don’t mean anything to you until suddenly they mean everything to you.)

“Mom, that’s Bill. You’re married to him.”

The first time you see your parent cry is weird and confusing and devastating — just like Alzheimer’s disease.

A few weeks go by, and my brother and I get home from school and we’re told that 1) Nana and Pop Pop are visiting; 2) Nana may not recognize us; and 3) we’re supposed to go along with this if it happens.

Preteen me is outraged. We can make her remember, I think.

My Nana looks through me when I talk to her and doesn’t hug me back. Everyone pretends as if none of this is happening.

Weird. Confusing. Devastating.

Two years later, I’m sitting on a metal chair in a hallway in Mary Manning Walsh Home, the nursing home in Manhattan where my Nana now resides. My Pop Pop takes the bus uptown every day to visit her. He hates when the nurses dress her before he gets there. He’s labeled her clothing and handles her laundry at home. He tells her stories. He feeds her. He “borrows” extra ice cream cups from other people’s trays because sometimes it’s all she’ll eat.

She can’t talk to him anymore. A series of strokes has reduced her to syllables. She says things like, “La luh, ba da, fa fuh, ka ka,” and he replies with things like, “I love you, Eleanor,” and “You look beautiful today, Eleanor,” and “Yes, I’ll turn ‘The Price Is Right’ on, Eleanor.”

MomDadRockaway

000_0075 (1)

We’re just visiting for the day, but I’m not in their room because the weirdness and confusion and devastation is frankly too much for me to handle, and I’d prefer to sit among oxygen tanks and wheelchairs and unidentifiable smells.

At one point, my mom and dad go to talk with someone down the hall, and my grandparents are left alone. From my spot, I spy. My Pop Pop holds his wife’s hands, and she riddles off syllables. The cable news plays in the background.

I’m on the verge of tears, but for some reason that early memory of him winning our “Winnie the Pooh” card game finds me, and I regain my composure. I can’t hear what he’s saying to her. I don’t know if her brain knows what she’s trying to say when the syllables come out instead. I don’t know if she even recognizes him.

But I suddenly realize it’s his being there that matters. It’s his long bus rides uptown that matter. It’s his patience and understanding that matter. It’s his chattering and hand-holding and clothing-labeling and ice cream thievery that matter.

I abandon my hiding spot and join them, and I lean into my Pop Pop, and I hold my Nana’s hand, too, and I think, for the first time, It’s OK if you can’t remember, Nana. 

Because we do.

Screen Shot 2014-11-17 at 9.59.44 AM

2k
2k
JOIN THE CONVERSATION

RELATED VIDEOS

Photographer Captures Brutally Honest Reality of Her Aunt's Alzheimer's Disease

165
165

Susan Falzone already knew what Alzheimer’s disease entailed when her Aunt Grace was diagnosed. She understood the devastation and frustration in watching a loved one’s mind deteriorate. Just years before, she’d witnessed the illness slowly take away the grandmother who raised her. She died in 2009.

After her own diagnosis, Aunt Grace summed up the disease best when, in the middle of a conversation she was having trouble getting through, she cut herself off and said this:

“Without my memories, I am nobody.”

Falzone, a photographer from Easton, Connecticut, wanted to use her work to help. While attending the International Center of Photography in New York City, she decided to focus her long-term project on documenting her aunt’s day-to-day life. With the ongoing series, “Grace,” she hopes to drive a conversation and raise awareness to a disease that affects about 5.1 million in the U.S., according to the National Institute on Aging. More than that, she wants to show those people and their loved ones that they’re a part of a community.

“You’re not alone; we’re going through this together,” Falzone, 35, told The Mighty in an email. “There are millions of families feeling the same heartache, the same frustrations and fears throughout the world. Sharing our stories makes us feel a little less alone.”

Susan's photograph of her aunt walking outside

Susan's photograph of her aunt on the telephone

Susan's photograph of her aunt buying a bouquet of flowers at a register

Susan's photograph of her aunt sitting in a dark room with light shining on her face

Susan's photograph of her aunt

Susan's photograph of her aunt reaching for something on the kitchen table

Six years later, Aunt Grace is 86 and in good health besides her mental state, according to Falzone. She can feed herself and go to the bathroom alone. She refers to her brother (Falzone’s father), who cares for her fulltime, as “Papa,” and speaks mainly in Italian, so Falzone now communicates with gestures.

“Aunt Grace still has quality of life, which my family and I are so grateful for,” Falzone told The Mighty. “[She is]just like you and me; she is representative of your mother, father, grandparents, your son or daughter.”

You can view more from “Grace” below and visit Falzone’s website for the full series.

Susan's photograph of her aunt walking outside at night

Susan's photograph of her aunt in a waiting room

Susan's photograph of her aunt sleeping in bed

Susan's photograph of her aunt's current house with photo of house from the past

h/t Feature Shoot

Live Mighty. Like us on Facebook.

165
165
TOPICS
, Photo story,
JOIN THE CONVERSATION

Teen's Awesome Invention Could Help Keep His Grandpa With Alzheimer's Safe

74
74

This story is filled with love… and genius.

Inspired by his desire to keep his grandfather safe, a 15-year-old from California invented a device that could help millions of Alzheimer’s disease patients.

Kenneth Shinozuk’s grandpa lives with Alzheimer’s and often wanders off in the night, according to the teen’s project page on the Davidson Institute for Talent Development website. His aunt, the primary caregiver, was losing sleep trying to keep this from happening. After failing to find a device to prevent this, Kenneth realized he would have to create his own.

The teen invented a slim sensor that sends an alert to a smartphone whenever pressure is applied to it, according to Scientific American. When attached to a sock, it lets caregivers know when a patient is out of bed at night.

Every 67 seconds someone in the United States develops Alzheimer’s disease, according to the Alzheimer’s Association. For the more than five million Americans living with the disease, Kenneth’s wearable sensor could mean a reduction in accidents and injuries that often occur at night.

I’d like to solve some of the mysteries of the brain,” Kenneth told NBC. “And invent tools to ultimately, I think, cure Alzheimer’s and other mental conditions that our aging population suffers from.”

The “Safe Wander,” as it’s called, is currently a participant in the Google Science Fair 2014.

Check it out:

Visit NBCNews.com for breaking news, world news, and news about the economy

Feel inspired. Like us on Facebook.

74
74
JOIN THE CONVERSATION

Daughter Tapes the Wonderful Moment Her Mother With Alzheimer's Disease Remembers Her

3k
3k

Some videos make you stop in your tracks. This is one of those videos.

On Friday, Aug. 29, Kelly Gunderson posted a clip (below) of a conversation with her 87-year-old mom, who has Alzheimer’s disease.

[My mother] knew who I was, even if just for a moment,” Gunderson wrote on YouTube.

At the :32 mark, you hear Gunderson say, “I love you, Mama.”

“And I love you,” she replies.

“Do you know who I am, though?” Gunderson asks. Then, some wonderfulness happens.

Take a look:

h/t Viral Viral Videos

Live Mighty. Like us on Facebook.

3k
3k
TOPICS
, ,
JOIN THE CONVERSATION

Donating Old iPods Can Help People With Alzheimer's Remember Their Past

71
71

We’ve heard of the healing power of music, but rarely do we get to see it in action.

In 2006, Dan Cohen, a social worker in New York, came up with the idea to use old iPods to create customized playlists for senior citizens living with dementia and Alzheimer’s disease. Cohen believed that hearing music from their past would allow these people to tap into older memories that might otherwise be lost to them. According to The Alzheimer’s Association of America, research suggests that music can tap deep into the brain’s stored memories as a person’s ability to engage with music remains intact even in the later stages of the disease. This allows even some of America’s 5 million Alzheimer’s patients to feel and act like themselves again for a short amount of time.

In 2010, Cohen created “Music & Memory,” a nonprofit that provides music therapy to seniors and helps caregivers create personalized playlists for loved ones and patients with Alzheimer’s. The viability of the organization was demonstrated in 2011 when a video (below) of a man named Henry, who has Alzheimer’s, went viral online. Henry, who was typically unresponsive, was given an iPod loaded with some of his favorite songs from his youth. Not only did hearing the melodies again make his face light up, it gave him a brief period of lucidity where he was able to converse with an interviewer and remember some fond moments from his past.

In the video below, ABC News introduces us to an 82-year-old Alzheimer’s patient named Bill Paese, who sang in a barbershop quartet when he was younger. When he hears that music today, his wife says she’s able to get a glimpse of the man she married.

“He’s in there, and sometimes we get to see him,” she told the station.

Cohen is hoping to expand Music & Memory’s collection of about 10,000 donated iPods to one million.

Anyone who hopes to donate their iPods to Music & Memory can do so here.

Live Mighty. Like us on Facebook.

71
71
TOPICS
, , ,
JOIN THE CONVERSATION

The Promise I Made to My Grandfather

104
104

I sat patiently at the bench, waiting for my family to arrive. The smell of incense filled the room, overtaking dozens of flower bouquets that embellished every corner. My young cousin took hold of my hand, looking for me to say words of wisdom. I could only offer, “He wouldn’t want you to be sad, so stay strong.”

Let me tell you a story of a man. He was a refugee from the Vietnam War who toiled and struggled to deliver his 12 children to the land of the free. Years after finally reaching America, his eldest daughter gave birth to two children: my brother and me. Growing up with my grandfather, I was taught many lessons, though I did not understand at the time, and sadly, to my regret, I overlooked them.

My young years growing up in our small house seemed to pass by in a flash. I faintly remembered the kindness of my grandfather. He would often buy gifts for me from the dollar store and would feed the neighborhood strays who wandered into our home. Young and naïve, I believed he bought all these items because he was wealthy, not knowing he collected recyclables for the money.

My family arrived and I obediently followed my orders, but my eyes often strayed to what lay between the two flower columns.

Years passed by and I no longer lived with my grandparents. My mother faced health issues and my brother and I were taught to be more independent as my mother needed her rest. My Vietnamese fluency began deteriorating as I only spoke English for school. I gradually lost my ability to converse with my grandfather but he tried his hardest to strike conversations with me using simple Vietnamese terms. Because of his patience and kindness, we could still hold conversations.

After hours of praying, each person was to take a rose from a basket. I gently picked out a white rose.

Camping and traveling with my grandfather, I believed the good times would never end, but like the leaves which bloomed beautifully in the spring, eventually it would fall. I remember the chaotic day when my grandmother had a stroke. Thankfully she survived her ordeal but things were never the same. My grandfather, however, stayed strong and by her side through every step. I noticed he started forgetting simple things but I believed it to be an effect of old age; I didn’t know what he was suffering from, and like my other relatives, I focused on my grandmother’s health instead.

We formed a line, with me in front of my cousins. As I watched my relatives give my grandfather a rose, I felt a churning feeling in my heart. My grandmother passed by in tears with my mother comforting her.

As the year passed, my mother told me stories of my grandfather’s condition and even I could see the deterioration of his mind each time he visited our home. He seemed lost from touch with the present time and told us the same stories about his childhood over and over.

Gradually, his friends stopped visiting him. It was too hard for them to bear his condition. He would always tell the same stories, not knowing he already told them so many times before. Family became all he had.

I reached my grandfather, bowed with respect towards him and lightly offered him my rose. “I’ll always be your Chuot,” I whispered.

Along with my growing age, my grandfather’s condition escalated too. He was more childlike, questioning several things, forgetting the purpose of household items, having bathroom accidents, and forgetting to do simple tasks such as flushing the toilet. Worst of all, with each new visit, I watched him forget my relatives. I watched my cousins cry when he forgot them. I watched the sadness on my aunts’ faces when he asked who they were. I felt special for he still remembered me, his Chuot—his little mouse—a nickname I used to loathe in the past.

My time was approaching. My eldest uncle went up first, then my father, then my uncle-in-law, and so on. Tears were shed, tissues pulled from their boxes, and noses blown. I could hear my young cousins break down into heavy sobs as I held in my own tears. “He wouldn’t want to see me crying,” I repeated to myself.

He always tried to be helpful to his children, attempting to clean up around the house, but due to his memory loss, he often misplaced items. My family was patient at first, but with each item disappearing, it grew harder. One day, my uncle’s glasses were misplaced. My uncle’s patience crumpled as he asked my grandfather where he placed it. Though he forgot many things, my grandfather’s pride was intact. He believed his own family thought of him as a thief and he grew furious. He started to become more frustrated with his life as his condition consumed him.

My uncle motioned me to come to the front. I realized, too late, that I forgot my speech at home. I grew anxious as I made my way to the front, the clacking of my heels speeding my pulse. I was handed the microphone. With one look at my grandfather, I turned to my audience and delivered my feelings.

He finally forgot my face. I greeted him at the doorway of my home as I usually did, but this time was different. “Whose child are you?” I felt a pang in my heart but I still forced a smile and replied simply, “I am Chuot,” in hopes he would remember the nickname. To my happiness his face lit up with remembrance and he hugged me like usual but our relationship had changed. He only remembered the little girl who he bought Barbies for, not the current me.

I was complimented after the ceremony, but I didn’t feel content. My uncle-in-law walked up to me, and he, too, congratulated me, but afterwards he looked to my grandfather who lay in the distance, and said, “Your grandfather was a great man. If only more people knew about him.”

I was cleaning my closet one day when one of my stuffed animals fell on top of my head—my old friend Wolfie—a souvenir from my grandfather. My old memories of the Yellowstone trip came back. I remembered climbing to the top of Arch Canyon, only my grandfather and me since my parents were too tired to climb. Reaching the top, we viewed a breathtaking vision. The valley seemed to be painted with the colors of the sunset. I was sad to leave, but my grandfather promised we would come back in 10 years and climb it again. As I held Wolfie close, I looked at the calendar. Half a year left till our 10-year promise.

Later that week, however, I discovered our promise would never be kept. He was diagnosed with bone cancer.

That night, as my relatives dined and my cousins played together, I secluded myself in an empty room, staring at the moon outside the window. I closed my teary eyes, pictured my grandfather and promised him, “I’ll make you proud.”

My relatives traveled far to visit my grandfather in his final days. Though he had forgotten everyone, he was happy to have so much company, to always have someone holding his hand as he lay bedridden and to tell him that all those around him were his children and grandchildren. There was a time when all of us gathered around him and though he could barely create expressions, a smile peeked from his lips. I wish I could have said at that time, “Look, aren’t you proud? All of your children, all of your grandchildren, we’re successful. We have done what you have always taught us to do. We all are now medical staff, law professionals, college students, or honors students.” My grandfather had always valued education. His wish was for each of us to obtain it because to him, education opened people’s eyes and hearts.

I felt angry at the disease. Why did it take away his time? Thanks to him, we are all living happily in America. His wish had been fulfilled but he forgot us all. He wasn’t able to bathe in happiness knowing his wish had been achieved. The disease took that away.

No matter how much time passes, I will never forget my promise to him. Before I knew he had bone cancer, I made a phone call to him. At the end of the phone call I told him, “One day I will become a great doctor and help take care of you!” I may not be able to keep half of that promise now but I will strive to become a great doctor. I cannot take care of my grandfather anymore, but I will have the ability to help many others.

Let me tell you a story about a man.

Essay from the Alzheimer’s Foundation of America Teens for Alzheimer’s Awareness college scholarship competition, reprinted with permission of the Alzheimer’s Foundation of America (AFA). For more information about AFA and the Young Leaders of the AFA, visit www.alzfdn.org or www.youngleadersofafa.org.

Be Mighty. Like us on Facebook.

104
104
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.