Celebrating Mother's Day With a Mom Who Can't Remember Me

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This Mother’s Day, I will do the same things I have always done for my mom. I will visit her, bring her flowers and tell her I love her. I will try to show her I appreciate the independent, strong and loving woman she has always been — and thank her for helping me become who I am.

In fact, the only thing that will separate this Mother’s Day from those of the past will be my mom. When I greet her, she won’t be able to remember my name or those of my two sisters. All the cards she will receive will be signed by close friends or family, but she won’t be able to recall their smiles or the sounds of their voices. Before we start our day, she will need help to get dressed and clean up, and get from her bed to the living room. When she sees me, she will smile. She still recognizes my face but cannot always put her finger on how she knows me.

author with his mom

My mother, who was once the primary caretaker of her husband and three kids, who worked as a substitute teacher and part time editor of the Harvard Business Review, who threw amazing parties and volunteered at the temple and ran a gourmet catering business in her spare time, has Alzheimer’s disease, just as her mother and brother had it before her.

My mom is one of 44 million people worldwide suffering from this disease that has robbed her of her memories, her sense of self and on her worst days, the desire to live and love. We are one of millions of families that have to watch, helplessly, as our mom, the once invincible presence that cheered us on, kissed scraped knees and hosted joyful family events, disappears more each day.

Moms and women everywhere are disproportionately targeted by this disease. Women constitute about two-thirds of those who have Alzheimer’s and also about 60 percent of the caregivers for those who have it. There are two and a half times more women than men providing intense care to a loved one suffering from the disease. Overall, Alzheimer’s is the sixth leading cause of death in the United States and the only one in the top 10 that can’t be cured or slowed.

My mom always pushed me to be proactive, so I have read many studies, poured over research and gotten involved with support groups, organizations and individuals who are determined to find a cure or treatment. My journey as a caretaker and as the son of an Alzheimer’s patient, even led me to help start a new organization called Give To Cure (GTC).

Give To Cure is currently working to crowd fund three cutting edge clinical trials for Alzheimer’s disease that scientific leaders agree show real promise for patients like my mom. GTC is based on a new model that doesn’t rely on pharmaceutical companies that select treatments based on their ability to turn a profit. Instead, we have asked the scientific community for help in choosing trials with real medical promise, and for funding, we have turned to caregivers, patients, families and friends everywhere that refuse to give up on their loved ones. We are looking to connect with families like mine, who will spend this Mother’s Day having lunch with someone that used to know us. We are asking you to help us find a cure.

This Mother’s Day I will celebrate my mom, and I will find joy in her strength and rebellious smile. I will find a little bit of peace knowing that there is hope for moms everywhere, thanks to the work that GTC and its research teams are doing. This Mother’s Day I will give my mom an extra hug for all the moms who cannot recognize the sons who love them.

This post originally appeared on The Huffington Post.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Unidentifiable Grief of Losing Someone to Alzheimer's Disease

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“You must be so devastated,” someone says to me at my nana’s wake.

I nod and tearfully walk away, following a devastated person’s script.

I am 19 and wearing a black dress that fits me weirdly. I fidget and shift in it while I attempt to avoid anyone and everyone. I haven’t yet hit that point where you appreciate condolences. “I’m sorry” feels empty. “She lived a wonderful life” feels cliche. “I’ll think of her every day” feels like a lie. “She’s in a better place now” feels insulting.

I am tired and uncomfortable and cynical as hell and sad.

But I am not devastated.

And that lack of devastation makes me feel like a monster.

***

“Kerri, get down from there,” my nana yells, as I defiantly climb the tallest slide in a park in Stuyvesant Town, Manhattan.

I have two problems with this instruction.

1. I am 6 and more than capable of safely using a slide, and “You should know this, Nana, because I am a big kid for crying out loud!”

2. My name is Megan, not Kerri. Kerri is my cousin, the oldest daughter of my mom’s big sister. My nana’s first grandchild.

Nana makes this slip up a lot, but I eventually learn to shrug it off. There are worse things, I decide, than being compared to the favorite grandchild.

***

“Do you want to come to visit Nana with me today?” my mom asks.

I know I have only a few seconds to mull this over. My short answer is no. My slightly longer, honest answer is no, it’s much too painful to see her like this. My out loud answer is OK. 

megan as a baby, walking with her nana
Nana and Meg.

Two years ago, a doctor officially diagnosed my nana with Alzheimer’s disease. At this point, she doesn’t respond when she sees me. She used to respond when she saw my Pop Pop, her husband, but he’s recently passed away. She lives in a nursing home on the Upper East Side, and my mom and aunt rotate in visiting her throughout the week. A series of strokes has reduced her to syllables. We’re not sure what she does and doesn’t process because she can’t tell us. We’re not sure which is worse — when she used to clearly say, “I don’t know who you are,” or now, when we’re left to guess if she recognizes us or not. I say “us” lightly because I have largely removed myself from the situation. I visit when my mom asks me to. I am 17, consumed with myself and convinced this woman is not my nana.

This is not the woman who leaves out butterscotch and Tootsie Rolls when I visit.

This is not the woman who plays UNO with me for hours.

This is not the woman who reminds me to be careful on the slide.

This is not the woman who says, “Love ya, love ya, love ya” at the end of every phone call.

Of course, this is that woman — that exact woman — but I am in a place where I cannot see or understand that. I hear muddled English. I see vacant eyes and bed pans and breathing machines. I spend my time wondering how it’s possible to miss someone who is sitting right beside you. I wake up in cold sweats when I have dreams about her. I cry when I can’t remember where I put my keys.

***

I spend the years after my nana’s death feeling immeasurably guilty. I try to focus on my favorite memories of her — her light laugh, her high-pitched voice, her insurmountable love for her husband, her famous noodles, our summers in Lavallette, N.J. — but I am weighed down by a mix of regret and shame.

What kind of person is not devastated at her grandmother’s funeral? is a question I ask myself often. For a long time I am unable to answer it. What kind of grandchild does not wait on her nana hand-and-foot when she is sick? is a question I avoid but cannot make go away.

***

I can’t name a defining moment where I realized I was torturing myself. It’s been a slow lesson, but I think it comes down to this:

That day at her wake, as I squirmed in my new dress, I was afraid to admit I had already grieved the loss of my nana because I thought that made me sound cruel and ungrateful. The truth is, I’d gone through the devastation when she was first diagnosed with Alzheimer’s and as her symptoms worsened. That devastation was strong and unfamiliar, and at times the only way I knew how to deal with it was by avoiding it. Saying that out loud made me feel like a bad person because it meant I was grieving my nana while she was still alive. I was supposed to be this hopeful, patient, thank-God-she’s-still-here grandchild. Not devastated and angry. What if, by admitting I was grieving a living person, I had been belittling my nana’s presence?

***

The five stages of grief are simplistic. Denial. Anger. Bargaining. Depression. Acceptance. Of course, this model is meant to be simplistic, but I think sometimes we run the risk of forgetting that we’re allowed to feel more.

Because we do — we feel so much more than that. We have in-between feelings that don’t have names. They knot and twist and build up inside us, clogging our arteries and pores. They’re foreign and confusing, terrifying and sometimes even beautiful. We cannot identify them with a dictionary or an ultrasound.

Alzheimer’s is an intricate mess of in-between feelings. You’re lost between patience and anger. You’re torn between dedication and what feels like — but isn’t — abandonment. You’re caught between defeat and hope. You begin to mourn the life of someone who is still alive and are immediately met with a heavy guilt. “People are actually dealing with death,” you tell yourself. “You should be grateful she is here.”

But grief is incomparable. I think we have to grieve in our own way, respect the way others grieve and not be locked into a specific way of grieving. We cannot feel guilty for our form of grief. We can learn from how we grieve, but we can’t shame ourselves for doing it the “wrong” or “inappropriate” way.

***

I was not an adventurous child.

When my nana tells me to get down from the slide, I do. I walk over to her on the bench, grumpy and prepared for battle.

“Nana, why don’t you ever let me go down the slide?” I demand. “I’m not going to get hurt.”

“I worry, you know that,” she says. “I just love you too much. I love ya, love ya, love ya.”

It’s a phrase we’ve since adopted as a family. It’s how we say goodbye to each other — on the phone, in person, via text message. It’s muscle memory at this point. I’ve always liked it because it’s become our own special way to say goodbye, I love you, see you later.

I don’t remember the last day I saw my nana alive, but I know this. Before I left I said, “Love ya, love ya, love ya.” And through the years of guilt and regret and disappointment in myself, I’ve realized that is enough.

I said goodbye in my own way, and that is all anyone can do.

nana with megan as a baby

Related: When My Pop Pop Taught Me How to Face Alzheimer’s Disease

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To My Grandmother Who Passed Away From Alzheimer’s

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To my grandmother,

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.

Tatyanna Blaylock when she was baby with her grandmother.
Tatyanna Blaylock when she was baby with her grandmother.

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.

Tatyanna Blaylock when she was a child with her brother and grandparents.
Tatyanna Blaylock when she was a child with her brother and grandparents.

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.

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Alzheimer’s Patient Makes Emotional Plea to His Friends and Family

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This man with Alzheimer’s disease has a message for his friends and family.

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.”

See the full video below: 

Posted by MaryBeth Alan Beamer on Sunday, January 3, 2016

Since the video was posted online it has been shared more than 6,000 times.

Correction: an earlier version of this post stated that Mary Beth and Alan Beamer were from Grand Rapids, Michigan. They are from Big Rapids, Michigan. 

h/t Fox 29

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When My Grandmother Said My Name for the First Time in 2 Years

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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.

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Son Records Heartbreaking Conversation With Mom Who Has Alzheimer’s

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Earlier this year a video of Joe Fraley singing to his mother went viral. Fraley’s mom has Alzheimer’s, and he captured the touching moment prior to moving her into an assisted living facility. He also filmed several other conversations with his mom during the transition period, which he’s sharing to help raise awareness for Alzheimer’s and show what it’s really like caring for those with the heartbreaking disease.

In the video below, Fraley talks with his mom, and she appears confused and distracted. “What I’m upset about is that I’m scared,” she whispers to him.

Fraley repeatedly tells his mom everything is going to be OK, while rubbing her back and holding her hand. “I’m sorry, I’m real scared,” she says again.

“I love you mom,” Fraley says. “Don’t ever be scared.”

I realize how disturbing this video can be to watch,” Fraley wrote on his YouTube page. “She now can no longer talk or walk. I think it’s important to raise awareness of this disease. So I posted it.”

In an update on the family’s GoFundMe page posted about a year ago, he noted his mom “has been experiencing hallucinations, cannot recognize us, will not eat, sleeps most of the time, and is combative.”

“You know what a loving, kind and blissful soul our mom was, and so it is clear the disease has a strong hold of her,” he added.

h/t Metro

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