The moment she said my name was a moment when time almost stopped. I felt the clock pause and I felt her eyes on mine, truly looking at me for the first time in two years. My grandmother’s vibrant personality and her love for life itself and humankind has slowly slipped away throughout the past few years, stolen by Alzheimer’s disease.
For years I called and visited, urgently trying to connect with her. I felt the clock ticking forward, and I feared what was to come. I soon realized the only connection I would have with her was through music. And so I continue to play piano, singing songs that take her back to a childhood that did not know of any darkness. During the moments I sing to her, her eyes open wide and stare right at me, like she is seeing a new, older version of me. She then begins to chant the songs with a voice I almost never hear anymore.
My determination to reach the real person inside my grandmother stems from the days when she took my 6-year-old hand and walked me to the Philadelphia orchestra once a month for many years. Those were the days she gave me my passion for music, and these are the days I give music back to her.
The day she said my name was last Thanksgiving. I had my family sing songs with her, like “You Are My Sunshine” and an array of patriotic tunes. I sat down next to her, took her hand into mine and was about to start another song. Her eyes locked with mine, and she said, “Oh Arielle, how are you?” A moment passed, and I smiled in shock while answering her simple question.
That was the first time my grandmother said my name in two years. All the other times we sing and talk, but she mostly nods. I never really knew if she remembered me. But that day, I believe because of the music, she was able to truly see me and say my name.
Although some diseases have unfortunately become a common reality for many families, I think it is important to share stories that are purely good. The darkness this disease brings makes it hard to see the actual person and the beautiful moments still happening right before our eyes.
My grandmother said my name for the first time in two years.
Time stopped, and I realized my music connected her to me for that moment.
And it was a story worth telling.
The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease?If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
1. “It’s not a part of getting older. There’s a misconception that as you get older you become forgetful and Alzheimer’s is just a continuation of aging, but it’s not. It’s a terrible disease, not a part of aging. It’s not something that’s inevitable or just happens. It’s something we’re trying to fight to bring awareness to because with funding and research there can be hope.” — Stephanie Vasquez
2. “Be patient with those who suffer. Repeating and forgetting require compassionate responses, not exasperated ones. The disease might hide the person underneath, but there’s still a person in there who needs your love and attention.” — Jamie Calandriello
3. “I wish people understood how scary it must be for the person going through it.” — Tbird O’Leary
4. “The disease is still progressing… even though helpful medication exists, there’s still no cure, and we have to keep fighting to find one.” — Sally Noelle
5. “Just because he looks fine at this moment doesn’t mean it will be the same in five minutes, tonight or tomorrow.” — Nikki Dodson
6. “[People with Alzheimer’s] can’t change the way it makes them act anymore than a cancer patient can keep the cancer cells from spreading.” — Brandyn Shoemaker
7. “I wish the world knew how heartbreaking it is to stand beside the woman who was the first one to ever call you by your name and realize she doesn’t know who you are. I wish they knew the joy it brings when she suddenly looks up at you after you’ve sat there for hours massaging her hands with lotion and says, ‘I love you, kid.’ It’s extremely hard to mourn the loss of my lifetime companion, my mother, while she’s still alive.” — Nancy Elizabeth Faram
8. “Rational thinking is gradually lost with Alzheimer’s, so don’t try to reason with someone with this disorder. Instead, distract them in as gentle a manner as possible. If they get angry or defensive, listen until they’ve said what they need to say. And remember, each time you interrupt or argue, you increase the duration of the conversation without resolving the issue.” — Rex Bierley
9. “It’s not simply forgetting things and people. It’s delusions, hallucinations, anger, poor judgment and personality altering. These things can come and go and the person suffering and their loved ones are on a continual and unknown roller coaster.” — Kimberly Crawford Bowman
11. “The reality of this disease is that there’s no remission, there’s no stopping it, there’s no slowing it down, there’s no cure and there are no survivors.” — Suzanne Tackett
12. “One moment there’s clarity, and they look at you lovingly and say your name. A second later, they look at you frightened or confused because you look familiar or they don’t know you at all.” — Samwise Gamegee Works
13. “Even though behaviors have changed — the person you remember is still in there.” — Roxzan Sukola
15. “It’s not just memory loss. It robs the person of who they are and the ability to do the most basic tasks.” — Janice La Bella
16. “Losing some memories doesn’t make the still present ones any less important and meaningful.” — Molly Halla
17. “I wish people wouldn’t ask how my mom is doing or if she’ll get better. I wish people understood that Alzheimer’s is currently a terminal disease and that caregivers have to watch their loved ones waste away in front of their eyes. It’s often a painful thing to discuss [because] every time they ask, the person is worse than before.” — Michelle Raza
18. “[It’s] devastating when a person who helped raise you completely forgets who you are.” — Odalys De Leon
21. “It’s the worst. People can’t handle it so they stay away. It’s isolating and lonely.” — Lisa Begley
22. “Although your loved one may not remember you or might do things that frustrate you, this is the time when he or she needs you the most. Your loved one needs you to care, to advocate, to be patient, to love and to be vigilant. Don’t turn your back on them.” — Angie Nunez Merryman
23. “I wish doctors would realize that the person with Alzheimer’s has thoughts and feelings about their care. Look the patient in the eye instead of talking to a family member and asking them questions as if the person who has Alzheimer’s isn’t there.” — Cynthia Adams McGrath
24. “You can’t explain what it’s like to mourn someone who’s still alive unless you’ve experienced it firsthand. It truly is the long goodbye.” — Jessica Seay-Soto
25. “[It’s] important to remember those who are suffering from Alzheimer’s as they were before the disease and to keep that person in mind when learning to cope with the disease.” — alib13
26. “The person who has Alzheimer’s knows that pieces of the puzzle are missing, and they are terrified.” — sheilamcphierasak
27. “To lose a loved one is always sad, but losing a loved one bit by bit is so sad. It’s horrible to watch someone you love struggling to find words and trying to remember things they realize they should know. You feel so helpless seeing someone looking lost, and you try to take away that fear.” — Jeanette Maxwell
28. “I wish people understood the unique experience of grief and loss that comes with Alzheimer’s. My dad was 64 when he was diagnosed, and we’ve been living the loss of him for four years now, even though he is still in our presence. I can still hold my dad’s hand, but I miss him every day.” — Anna Copley
29. “Alzheimer’s patients are people, not patients. They are husbands, wives, brothers, sisters, bosses, employees, sons and daughters, all of whom were robbed of time and the ability to continue to chase their dreams and live their lives freely.” – nicoleadeline
30. “Referencing ‘The Notebook’ doesn’t mean anything to me. [My mother] not recognizing me is the least of my worries because she no longer knows how to swallow.” — fancyy77
31. “It can happen to anyone, young and old… my dad was 49 when diagnosed.” — karli_anne1012
32. “I wish other people would understand that the person affected by Alzheimer’s is not a child or a toddler, as I have heard people casually say to me. Yes, they have childlike qualities, but people have to understand this individual is still an adult, and you can’t treat them as you would a kid. My mom can notice when she’s not getting the respect she deserve.” — a11ofthelights1832
33. “They may not be able remember who we are, but they feel us just the same.” — Amanda Dillon
What would you add to this list? Let us know in the comments below.
When I was 7 years old, my grandmother was diagnosed with Alzheimer’s disease. I’m the oldest of her four grandchildren; my brother was 4 and my cousins were 4 and 2. When she died, we were 10, 7, 8 and 5 years old, respectively.
I remember when my mom told me about my grandma’s diagnosis. She said something like, “Mama is sick now, but we can’t ask her about it.” I’m sure she explained more, but I don’t really remember. If she did explain more, I probably didn’t understand. I still don’t understand.
This is what I remember: I remember watching my grandmother forget every single one of us. I remember watching my grandma forgetting how to talk, and how she only babbled one sound over and over: “toh-toh-toh-toh.” I remember how it looked like she couldn’t hold herself up because she was so slouched over when she walked. I remember the heartbreaking day she had to get a gastro-tube because she couldn’t eat on her own anymore.
But here are the other things I remember – the things that helped make me who I am, both as a person and as a Board Certified Behavior Analyst (BCBA).
I remember when Mama found $20 on the ground in a parking lot, and I also remember being excited because I thought my mom would let my brother and I split the money. But she didn’t. She said Mama found it, so it was hers. It didn’t matter to my mom that Mama would never buy anything for herself again, that she didn’t talk or that she probably didn’t even know what she found. She found it, so it was hers. She was different, but she was not less.
I also remember another day; we were in the car. Mom was driving us around Miami. I don’t remember why, but knowing my mom, she was probably just trying to keep us all busy and having fun. Mama was in the passenger’s seat. She was babbling sounds, and I told her I didn’t understand what she was saying. I wasn’t being rude or mean – it’s just that I was about 8 and I didn’t know what else to say. My mom immediately told me not to tell her that and explained that just because we don’t understand her doesn’t mean she doesn’t understand us. She wasn’t being mean or angry either. It was a long time ago, but how I remember it is that she said it in a very matter-of-fact way.
Then, without any more information, she showed me what she meant. She responded and acknowledged Mama’s sounds. In all honesty, they meant absolutely nothing. They weren’t words – they weren’t even parts of words. She was literally babbling. Like a baby. Mama made the same sound over and over (“toh-toh-tohtohtoh”). But, again, that didn’t matter to my mom. What mattered to my mom was that Mama was still a person, and she still deserved what the rest of us deserve. So my mom had a conversation with Mama. My mom saw beyond the babbles, beyond the memory loss, beyond the physical change, beyond the heartbreaking situation that sat next to her. My mom saw only my grandma.
My mom may not even remember these stories, but this is how she taught me to see the world. From Mama’s Alzheimer’s to our other family members diagnosed with autism, cerebral palsy and more… I see a world of people who are different, not less.
I so desperately want to help the rest of the world to see it, too.
In loving memory Fra Fonseca, “Mama”
January 1937 – October 2000
The outlet that tells the story of New Yorkers, one human at a time, has done it again. This time, HONY hit home with a man’s touching story about memory loss.
In a recent HONY post, an anonymous man talks of dealing with the inability to remember specifics about his life as part of an unspecified hereditary condition. He says his memory loss has forced him to withdraw from most social interaction.
Despite this heart-breaking admission, the story has an uplifting angle. The man confides that he has a dear friend who won’t fade into the background.
“I do have one friend who won’t give up on me,” the man told HONY. “He calls me from Florida. And if I’m trying to tell him about a bridge, he’ll list off every bridge in New York City until I remember the one that I’m trying to talk about.”
Here’s to true friends — the kind who don’t mind listing some bridges or repeating some things. The kind that can outlast memory.
Expecting Adam is Beck’s moving memoir of her and her husband, John, and their decision to carry to term their child with Down syndrome. Once Adam is born, he becomes an impetus for a significant change in perspective for the Becks.
Kedar, who has nonverbal autism, was just 16 years old when he published this compelling collection of autobiographical essays. Intended to defy common misconceptions about his disorder, Ido in Autismland demonstrates Kedar’s fiercely brilliant mind and provides readers with incredible insight into the world of autism. A must-read if you or a loved one has nonverbal autism.
When one of his students mentions that he dreams of becoming an astronaut, Kersjes decides to take his special education class to space camp. Turns out, this is easier said than done. Kersjes must clear innumerable hurdles before taking the trip, including preparing his students, whose disabilities range from Down syndrome to Tourette syndrome to dyslexia, to spend six days living and training like astronauts.
When Davenport’s son turned 15, he began demonstrating signs of a serious psychiatric disorder: he suffered horrifying hallucinations, became violent and sometimes didn’t recognize his own family members. Doctors were never able to pinpoint a diagnosis. This beautifully written and profound memoir is an important commentary on the state of the mental healthcare system in the United States.
After Brodey’s 4-year-old son was diagnosed with a mix of special needs, she found solace confiding in other parents going through the same thing. This collection of honest, personal essays written by moms and dads of children with special needs, addresses topics that will resonate deeply with parents going through similar experiences.
This late cartoonist was known for incorporating difficult topics into his controversial, darkly funny works. In Don’t Worry, He Won’t Get Far On Foot, Callahan describes with candor his life after becoming a quadriplegic, his recovering alcoholism and how he continued to find comedy in bleak situations.
O’Brien, an award-winning journalist, was diagnosed with early-onset Alzheimer’s disease at age 59. As a coping mechanism and to keep his mind sharp, O’Brien began meticulously detailing the daily hardships of the disease, chronicling what was happening to him day-by-day for six years. He later turned his notes into this insightful autobiography.
This science-fiction novel takes place in a futuristic society, where disease and disorders are a thing of the past. Protagonist Lou Arrendale was among the last to be born with autism before the condition was eradicated, and now, he’s faced with the chance to undergo an experimental treatment which could “cure” his autism. But will losing his condition completely change who he is as a person and how he views the world?
This bestselling children’s book tells the fictional tale of Auggie, a fifth-grader with a severe facial deformity, who wants nothing more than to be treated like an ordinary kid. The book begins with Auggie’s perspective and later includes that of his classmates, his sister, her boyfriend and others, to create a portrait of a community learning to accept peoples’ differences.
This mystery novel centers on Christopher John Francis Boone, a 15-year-old boy who knows all the countries in the world and their capitals, as well as every prime number up to 7,057. He also abhors being touched and cannot stand when the different foods on his plate meet. When the neighbor’s dog, Wellington, turns up dead, Christopher must work past his difficulties with people and in interpreting the world around him to uncover the person responsible.
What would you add to this list? Let us know in the comment section below.