Remembering My Grandma, Even When She Doesn't Remember Me

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grandma eileen with a camera When I think of my Grandma Elaine, I will always remember the traditions we created. Every year, things were the same. I’d go up to her house in Maine for two weeks in the summer (sometimes with my friends). She’d come down to see my plays, even when I was in the ensemble. She was at most piano recitals and chorus concerts, even with the more than four-hour drive. Whenever I’d visit we’d sneak out to breakfast and catch up at a little diner attached to a department store in Brunswick, Maine. We used to get chocolate pancakes. I can still taste the hot cocoa.

After they closed, we would go to McDonald’s for breakfast because she loved the hot cakes. She used to talk to me about boys and how to go about my crushes. We used to get our nails done in the Tontine Mall. We would listen to Michael Buble and bond over her favorite songs. She talked to me about my future with no pressure.

She always cooked fudge, and I remember bringing some into my sixth grade English class when we were reading “Who Really Killed Cock Robin?” The fudge was a hit, but the book was disappointing (when you find out pesticides were the killer). She used to let me steer her car while she drove, as long as I didn’t tell my mother about it. I talked to her on the phone weekly, up until college, and even then I made sure I called. I always pictured her at my wedding and around when I had children.

Christmas was our most cherished tradition. My parents and I would drive to my grandparents’ house in Maine and would bunker down for a few days. Every year was the same: The day before Christmas Eve, we would eat at Richard’s German Pub with her cousins. On Christmas Eve, we would go to my great-grandmother’s church. After church everyone would try to convince me to open gifts early, and I would refuse. We would open one gift (always pajamas and slippers). Christmas morning we would open presents and she would make blueberry french toast, and we’d end the day with Gramp’s famous prime rib. In between our traditions, we would catch up on the past year and retell all our favorite stories while drinking eggnog. We loved our traditions and loved our memories together. We loved storytelling.

I think that’s why it was such a shock when I found out she had Alzheimer’s disease.

I haven’t seen her in almost a year now. At the time, I was about six months pregnant. She looked at pictures and ultrasounds with me. She even kissed my belly and was happy to see how big the baby was getting. I thought she was OK, a little bit off into her world but not as bad as I was expecting. The next day I saw her was a little harder. I painted her nails (like old times), and she wanted to pay me for being her nail technician, not realizing it was me. She had a moment of clarity as we left too, which made it difficult to leave. Now she’s unable to talk on the phone. So our phone calls and Skypes aren’t an option. She’s disoriented when anyone sees her. Aside from my mom, aunt and Gramps, no one really gets to see her anymore. This way, we can keep her comfortable.

I took everything pretty well and was able to separate emotions from everything. I’ve been able to be there as a support for my family. I’ve handled it better than I thought I would. Up until I went to call her to ask her about pregnancy and realized she wasn’t able to comprehend a phone call at the stage she’s in. Then there are the times when I want to share a story about my son or my growing career she believed in. I realize she won’t be the one answering the phone ever again. What really sucks about Alzheimer’s is, aside from few and far between moments of clarity, it’s irreversible.

Once, it was realistic to picture her at my wedding, at Jack’s birth and to think of Christmas in Maine every year. Now I don’t know if it’s realistic to even be able to talk to her one last time. I’ll probably never be able to call her again or gossip about boys and family members. I’ll never be able to hear stories from her or hear her sing along to songs she doesn’t know the lyrics to. I’ll never be able to cook fudge with her again or go to breakfast and talk. I’ll never go to Fat Boy’s Drive-In and get ice cream at the shop next door. I’ll never see another show with her or be able to perform for her again. She may never even be able to meet my son.

Alzheimer’s has taken my Gram away from me; however, she’s still here. That’s the hardest part of loving someone with this disease. I have to mourn her while she’s still living. People always talk about “not wanting to remember the person when they’re dying,” but never talk about not wanting to remember the person when they don’t remember themselves.

My Grandma Elaine is a very loved woman. She has always been strong for her children. She had a beautiful marriage with my Grandpa Ed and has seen such beautiful parts of the world with him. She has made so many people laugh. She gave back when she could and loved all of us the same. She was a wonderful woman. I regret not listening to her stories while I could and not always being there. I can’t make up for lost time anymore. All I can do now is help my family cope and help make her comfortable.

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How a Doll Made a Difference for My Mother With Alzheimer's Disease

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My mom, who we affectionately called Mummy, was a highly social person who loved to play endless card games, take shopping trips, visit relatives, volunteer at her church and tell family stories to anyone who would listen.

As Mummy got older, I started to note some personality changes and odd behaviors.

One night, Mummy phoned to say she was all dressed and ready for an outing we had planned the next day. She didn’t seem to grasp it was dark outside and I would be picking her up in the morning. A few weeks later, she became very upset when she didn’t win at bingo and was convinced her friends had cheated.

Mummy also had great difficulty conveying her thoughts. She’d start talking but could rarely finish a whole story and sometimes not even a complete sentence.

The diagnosis was Alzheimer’s disease, and over the next eight years, it would rob my mom of almost everything.

Not long after she was diagnosed, Mummy moved to a care home. As time passed, she was no longer able to have meaningful interactions, which caused her to withdraw. Day after day, she sat quietly in her room.

As her world seemed to grow smaller, Mummy often appeared sad and depressed.

Driving home after visiting her, I’d often think, “What could I do to bring more joy and contentment into my mom’s life?”

It was time to try something new. I’d read about doll therapy for those with Alzheimer’s disease and other types of dementia.

The premise is simple: Introduce a soft-bodied, realistic baby doll to a person with memory loss and see how the person reacts. Researchers in the U.K. have conducted doll therapy research as far back as 2001. “An increasing body of evidence suggests the use of dolls can have a positive impact on people with dementia in residential care,” Patricia Higgins, a memory service nurse specialist, wrote in the Nursing Times.

However, Higgins also stressed using dolls to enhance the well-being of people with dementia shouldn’t be a substitute for other therapeutic activities. She also added that it’s difficult to determine who will enjoy the doll and who won’t.

I certainly didn’t want to create more challenges for Mummy, but I also felt compelled to help ease her isolation and obvious loneliness. What did I have to lose?

Nancy Wurtzel’s mother
Nancy’s mother with the doll.

When I handed the pink-swaddled bundle to Mummy, I could see she was instantly captivated. With watery eyes and a sweet smile, she beamed at the little doll in her arms. Instinctively, she hugged the doll close and whispered in a soft voice, “Well, I’ll be darned.”

It was the most words she had spoken in months.

From that moment on, Mummy and Baby Doll, as we dubbed her, were inseparable. Kissing, cooing and caring for her doll filled Mummy’s long days. She especially loved showing Baby Doll off to others, even allowing some people to rock the dolly for a few minutes.

When I now visited Mummy, she didn’t seem desolate. Instead, she had a small baby to care for, which seemed to give her life new purpose and meaning. Together, we’d sit and admire the doll. Mummy would smile, hold Baby Doll to her cheek and quietly hum a nameless tune.

Watching the healing power of this special relationship reinforced my belief about the strong instinct and need to show affection at every stage of life. People would often ask me if my mom believed the doll was a real baby. I wasn’t sure, but it made no difference. Mummy simply loved and adored Baby Doll, and, in return, the doll brought great comfort to a mother nearing the end of her life.

Late last year, when she was in the final stages of the disease, Mummy moved into my home. Under hospice care, she died a few weeks later with Baby Doll, her constant companion, cradled in her arms.

My Alzheimer’s caregiving experience was often filled with feelings of frustration and sadness. Yet, there was also laughter and glimpses of pure joy, even during the later years of my mother’s illness. Looking back, Baby Doll was often at the center of those happy moments. The little doll was such a simple idea, yet her impact was astonishing.

Today, Baby Doll is still wrapped in the same pink blanket. She’s safely tucked away, resting comfortably on a high shelf in my bedroom closet. But I have the feeling Baby Doll’s days of spreading love and joy are not over. I think Mummy would approve.

Follow this journey on Dating Dementia.

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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If Your Heart Is a Little Broken This Mother's Day

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My last good visit with my mom was Mother’s Day 2013.

My brother and I went to see our mother together in the nursing home in San Marcos where she had been living for the last five years of her life. She was lost in the late stages of early onset Alzheimer’s disease, rarely making eye contact and no longer able to speak.

On this rare visit though, she locked eyes with me and smiled. It felt as if she was looking into my heart and soul, saying:

“I know you are mine. I see you, and I love you.”

The next time I saw my mother, a few weeks later, she was unconscious on her deathbed. I regret that I let so much time pass between our final visits, but I know now that our last true encounter was such a gift.

I was pregnant with my second daughter and chasing after a toddler when my mom died. I didn’t really take time to grieve, and, to be honest, I thought I had already finished grieving during the decade I’d spent watching her decline into advanced dementia.

But I was wrong.

Grief follows no rules or timeline. It cannot be contained or ignored. Eventually, it rears its ugly head and makes you choose to either run or fight.

You can choose to run to other things to forget and dull your pain, or you can choose to fight for survival through the pain.

I think I did some of both. I think we all do a little running at first. We use our friendships or the pursuit of fame or fun to escape our pain for a little while.

And finally, if we’re lucky, we learn to “obey the sadness,” to borrow a phrase from Sarah Bessey. We learn to sit in our pain and actually feel it, so we can process those deep emotions and come out the other side stronger and wiser.

author hugging daughter

Maybe I’m still in that second part now, three years later, trying to navigate being a mom without my mom, day by day.

I know deep down it’s OK to let Mother’s Day be about myself and my relationship with my kids now. But every year, it feels as if a part of me is missing.

I celebrate my mother-in-law, my maternal grandmother and all of my wonderful extra mothers on Mother’s Day.

But my heart still aches for my real mother, the mother who knew and saw and loved me, even in the late stages of dementia. My heart still aches for the mom who taught and encouraged and inspired me.

When you lose someone you love, your worst fear is that they will be forgotten.

You sometimes feel like you alone are tasked with keeping your loved one’s memory alive. And you often feel like the rest of the world has moved on, while you’re just not ready.

If you’ve lost someone you love, the truth is that you will never really be ready to move on, and you don’t have to be. You simply need to find your own way to keep their memory with you as you move forward.

birthday card from author's mother

Whether this is your first Mother’s Day – or your third – since you’ve lost your mom or a childyou will eventually find a way to keep loving them and keep on living at the same time. You will find a way to honor their legacy while also living out your own.

If your heart is just a little broken this Mother’s Day, please know you are known and seen and loved, by others in the same boat. You are never alone.

Give yourself permission to celebrate what you have and grieve what you have lost at the same time. Make room for the sadness, but be sure to embrace the joy, too.

Your loss is not forgotten, and neither are you this Mother’s Day.

Follow this journey on For the Love of Dixie.

The Mighty is asking the following: What is the best advice your mom gave you while growing up with a disease, disability or mental illness? 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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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.

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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.

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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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