Do you remember the time we went camping in the RV? The Grand Canyon? Of course, you don’t. But that’s OK.
Alzheimer’s was never something I even imagined someone close to me would be diagnosed with. I remember like it was yesterday. You were diagnosed with Alzheimer’s disease, and Papa was diagnosed with dementia.
There doesn’t need to be any scientific explanation because it’s something you don’t need to explain. It’s something you don’t cram into a textbook and let students skim over it. The only thing needed was patience.
Your Alzheimer’s disease grew worse and worse, but you were a fighter. You didn’t want to give up because you taught me to stand strong in any situation life throws at me. You were always my biggest role model, and, more importantly, my best friend. But all of that has been stored in my memory while yours is on vacation.
You had gotten very angry many times, and many arguments broke out between you and Papa. But you still loved him. And it’s heartbreaking we couldn’t tell you he passed two years ago; you forgot we told you and got angry and would ask where he is. We couldn’t put you through that kind of hurt constantly and break your heart.
Do you remember me waking you and Papa up on Saturday mornings to go out? See a movie or grocery shop or go out to eat? Waking you up every time was always such a blessing. Because you woke up. But this last time, you didn’t wake up.
My brother and I grew up and saw you less and less. And after Papa had died, you were forgetting more and more. Eventually your body started to let go. You lost strength, and eventually, your mind had gone with it. I’m sure you’re up with Papa remembering the good times. But this is what you couldn’t remember.
You passed away in your sleep the evening of February 3. Just like Papa, you went with ease and no pain or sorrow. I believe you closed your eyes only to be greeted by Our Father and the pearly gates to heaven. You woke up to your husband and your parents. You woke up with no pain, remembering every little thing you couldn’t.
To my grandmother, I love you more than words can say. And one day, I’ll wake up and you’ll be there, and we can spend eternity making spaghetti.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.
Mary Beth and Alan Beamer, from Big Rapids, Michigan, posted a video to their shared Facebook account on January 3. In the video, Mary Beth asks her husband, who has Alzheimer’s, what he wants people, specifically his friends and family, to know about the disease.
Alan Beamer, calling the disease “one of the meanest things” he’s ever seen in his life, gets emotional while making a plea to his friends and family to visit and to see him as the person he was before the diagnosis. He and his wife say that people have stopped coming by to visit with Beamer.
“They need to know that I’m the same old person,” Alan Beamer says in the video below. “I wish some people, my friends, would come up to talk to me just like you did before. You know, play and joke around… I know they’re afraid of me… I wish they’d come over, and they’d only have to stay for 5 minutes, or 10 minutes. We could talk about what’s really happening behind the scenes.”
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
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