13 things people affected by alzheimers disease want you to learn text on sand with hearts drawn in sand

13 Things People Affected By Alzheimer's Disease Want You to Learn

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With an estimated 5 million Americans or more living with Alzheimer’s disease, chances are you or someone you know is affected, yet many people don’t know what life with Alzheimer’s is truly like. It’s important for patients, families and caregivers to share the ways Alzheimer’s disease has had an impact on them, and the work we still have yet to do in treating the illness and researching for a cure.

We collaborated with the Alzheimer’s Prevention Initiative, led by Banner Alzheimer’s Institute, to ask our Facebook communities what they hope people learn about the disease. Their answers reveal how Alzheimer’s disease affects entire families, and above all, the importance of showing respect and love for the person behind the symptoms.

Here’s what they said:

1. “Alzheimer’s isn’t just being forgetful. It is a physical deterioration of nerves in the brain. The disease is painful for the patient and painful to watch loved ones go through. It affects so much more than just the patient’s memory.”

2. “Just because a [loved one] has it, it doesn’t mean [you] will lose their family member/friend altogether. It’s a struggle of course, but they’re still there.”

3. “It doesn’t only affect the elderly, and it’s not a black-and-white diagnosis. It comes in many forms.”

4. “Someone still lives inside the body of the mind that is overcome by Alzheimer’s. It may be a smile, a tear, a glare, a mumble, or a simple look… Don’t forget they are still there, and don’t let them alone thinking they don’t know or deserve your time.”

blurry hands holding with text that says someone still lives inside the body of the mind that is overcome by alzheimers

5. “They may not remember who you are or anything about their life, but they are still a person with real feelings and emotions.”

6. “As a clinician, it’s sad when family sometimes stop visiting because they feel there is nothing left of their loved one. It’s not true that there’s nothing left inside, we just need to find it.”

7. “Denial is the number one thing that can slow the process of a diagnosis. Don’t deny the signs.”

8.I want people to know how most of your friends seem to disappear! Maybe they feel uncomfortable and don’t know what to expect… He notices this and feels so bad for me because it affects my life, too. The spouse also [struggles with] this disease! Thank God for those special friends who have stuck with us!”

9. “I want people to understand how many different types of dementia [there are] and that not every case is the same.”

10. “When you lose a loved one to Alzheimer’s you mourn them twice: first when they are no longer the person you once knew and then when they actually pass away. It’s a brutal disease for everyone involved and it changes the way you view the world forever.”

11.Everyone asks the same question, ‘Does your dad still know who you are?’ I know the question comes from a place of love and curiosity, like it’s a gauge of some kind… I’d rather have people know what an amazing man my dad still is, so I focus on the good when I respond to the questions.”

12. “There is a lot of work to be done for those [who have] this terrible disease. At this point there is no cure, no hope, and very little resources and support for those living with Alzheimer’s and their caregivers. I hope in the very near future this changes.”

13.They don’t just fade away. They know something is wrong and [experience] shame they shouldn’t have to. Treat them with kindness and patience no matter what.”

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To My Grandfather Who Has Alzheimer's: I Will Not Let You Go

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I’ve never had a bad meal at your house. Ever. 

Until today.

You’ve never forgotten a character in the hundreds of stories you’ve recounted from your childhood at least a thousand times.

Until this year.

You were the one, just 10 years ago, who drove us all over the backwoods of Alabama and Georgia, introducing me to all your old friends, showing me family graves and letting me experience the wonder of your old stomping grounds through your eyes.

Banana pancakes and sausage are my favorite thing, but only when you cook them. “You know I stick strictly to a recipe” has always been your joke. And we all know it’s the furthest thing from the truth. I never knew about scratch cookin’ until you.

But this morning when I arrived to spend time with you and Nanny, you didn’t even remember you were supposed to cook us breakfast until she came downstairs half an hour later and mentioned it. I couldn’t find the nerve to tell you again.

Oh, the countless hours we’ve spent on the phone at night since I was a senior in high school. I wonder if my teachers ever figured out the night editor for the Birmingham News had written half my papers.

And when I was in college, you and Nanny would hop in the car and drive to Tennessee for the weekend. What a blast!

You — the great conversationalist — the greatest storyteller I have ever known. You, who never forgot a name, or a detail, or a story… it seems we’ll be the ones telling the stories from now on.

This morning, as we sat, mostly quiet, I thought back on all our heated discussions of theology. Everything I’ve ever learned about Calvinism and the restitution of all things came from you. You were the one person I could always talk to about the things no one is ever supposed to discuss: religion, politics and a myriad of current affairs. For years, you’ve been my teacher. My mentor. My friend.

Oh, how I wish we’d written that novel I’d always secretly wanted to co-author. And finished the family video project. And made that book of all your “isms”.

But we didn’t. And you are fading. And my heart breaks with every single visit. As I ease down that long dirt driveway, through the trees, bumping along, tears splash down on my  shirt and I feel like the Heavens should cry too, just to adequately set the scene.

The Vietnam war correspondent seems to be fighting a war of his own now. A war none of us truly understand, but we all see the effects of this miserable disease.

Alzheimer’s. I hate every syllable.

But you, ol’ bud, I will not let you go so easily. You didn’t let me go when I was a kid and took your pocket knife and cut up the interior of your Ford truck. You didn’t let me go when I was a pre-teen, playing in the old junk cars down by the barn and forgot and left the dog locked in there in the heat of the Alabama Summer. It’s a miracle the old dog made it.

But you didn’t let me go. And I won’t let you go either.

Even when it is frustrating as hell. Even when I sob my eyes out on the way home. Even when I am angry at the disease and want to avoid this foggy misrepresentation of such a sharp and brilliant man, I refuse. Because you have never walked out on me. Never been too busy for me. Always taught me with such patience and were willing to do anything I wanted to do, just to spend time with me.

So maybe it isn’t theological discussions any more. Maybe we don’t rant and rave about the plight of American politics. You just want me to find you pictures of blue jays and cats on the iPad. And that is perfectly fine with me.

Even if I have to write down your Facebook password a hundred times. Even if I have to make the long drive a million more times, just to turn your computer on (when you are convinced there’s something wrong with it). Even if I have to hear you tell me the same story three times in the same conversation. I’ll keep showing up. Keep cherishing the good times. And celebrating the moments when you surprise us all and show up fresh and sharp for a few brief moments.

For as long as that remains. I’m not letting go.

Maybe we’ll cook banana pancakes together next time.

 

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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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