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The Path of Alzheimer’s – Why Did It Take So Long?

The Path of Alzheimer’s

by Michael Ellenbogen, living with dementia

mICHAEL_ELLENBOGEN_SPEAKING

Why did it take so long to see the light?

Going down the path of Alzheimer’s is a very terrible role for the person who must take care of them. It’s a road no one wants to take willingly. But when you do it does something to you; you go to a point where there is no return from it. If you have been there you know what I am talking about. The only good news is that there are many others like you who are in the same leaking boat that you can relate to and tap into resource as needed.  They are there to cheer you on or to pick you up from the gutter when the day seems hopeless. Those caregivers form a unique bond. When it’s all said and done they are able to pick themselves up again.

Many just want to forget about all they have gone through, while others continue to help other caregivers to some point. Then there are a few who take the role of being champions and do so much more for the cause.

On the other hand, you have those living with dementia or should I say dying with it. Many can no longer speak to anyone, including their own caregiver. They don’t seem to have the same level of support or resources. This has been going on for so many years. It just seem the caregiver has more available resources than the patient who is actually slowly wasting away. There are so many more caregivers out there defending the caregiver but not enough standing up for the person dying with dementia.

Did you ever wonder why this is?

I have been complaining about this for so many years and been blaming others for why we don’t have resources and people to help us as we go through this slow and painful death. It finally hit me, it’s because the caregivers are the only survivors in this battle.

They went through boot camp. Then the long battle of decline. This has lead to the building of personal feelings and pressures that one had to learn to deal with. This has built some very strong people in the end. When they are finally able to rise again they decide to only help those that went through the same thing as they did. They can relate to their pain they want to forget about the pain their loved one went through. So in the end people like me who are living with dementia have no voice. No one speaks up for them and they continually suffer to the end because none of those caregivers thought about supporting the other side.

Then of course you have all of the organizations that are looking for money and there ongoing support.  While they say they are for Alzheimer’s and other dementias they are really for the caregivers because those are the people that will be around to keep giving them the money in the future. Those of us with dementia don’t seem to matter to them and that is why we keep getting the short end of the stick.

So I guess I will need to plead to all of you to do something to stop this damn disease so that we will not need to chose a sides and all of the organizations will need to adjust their mission statement. Until then I guess all of us with dementia will continue to take a back seat and lose our rights. I can tell you as long as I am alive I will fight to change that. Frankly I am tired of people telling me what they can do for the caregivers.

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Third Mother’s Day Without Mom

Feeling Lost and Privileged

Below is an article I wrote for my first Mother’s Day without Mom.  It was a very healing moment writing about her. I feel it still stands true and maybe, just maybe it will help others on their own healing journey.  I hope  you enjoy it.

By Lori La Bey – copyright 2014

Lori La Bey of Alzheimer's Speaks & Senior Lifestyle Trends

Lori La Bey founder of Alzheimer’s Speaks

Through my mother’s thirty year journey with dementia she continued to guide and teach me; love me in ways I did not know where possible, especially in times of illness.  It’s now been 72 days since mom slipped into the heavens and joined my father. Although I can rationalize her journey on earth is over and she is now in a much better place, free of pain, fully mobile and mind intact; I am struggling.

Today I Will Visit Her Grave Site With My Beautiful Daughter Danielle,

Who Loved Her Grandma So Very Much.

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Going There Gives Me A Sense Of Peace.

headstoneThe Cemetery, A Place Where I Can Honor Her,

Leave Roses And Balloons In Honor Of Our Relationship And

The Love We Had For One Another.

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Throughout My Life, My Mother Has Been My Logical And Loving Conscious.

Mom Was My Rock.

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Mom is the one I could always depend on. She was not only my mother, but my best friend.  As my friend Lisa Hirsch titled her book, “My Mother My Hero”  pretty much sums it up!

Through tough times she was my guide and support.

On special occasions we celebrated together.

Mom Taught Me:

To look for the tiniest of things to be grateful for.

To hold a hand out to those in need.

To love deeply.

To consciously make a difference in my life and others.

To work hard and be responsible.

To understand my impact on others; realizing, appreciating and honoring the world is much larger than myself and that we are all interconnected.

To understand that to be a Mother one does not have to have their own child; but rather to be willing to adopt a child in mind, body, heart and soul.

To make a connection and difference in someone’s life, is to be a Mother.

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Mom Showed Me How By The Way She Lived Her Own Life.

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Leading by example showing me a variety of ways to be a compassionate person.

How to listen to others, not just hear their words.

To look for nonverbal signs of what others truly want or need, when their words were lost or pride held them back.

To look past the everyday judgments and see the whole person standing before me.

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Through Illness Mom Taught Me:

To let go of control. To realize it is a mirage, a trap of guilt and pleasure.

To embrace the simplicity of life.

To smile and spread grace.

To love more deeply than I ever knew was possible.

To laugh hard and authentically to embed the moment into my soul.

To look for and create joy in all moments of life, no matter how difficult they are.

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To talk openly and honestly with others acknowledging all emotions without embarrassment.

To understand we are all in this life together and that shame, guilt and denial shut us down. Realizing the only way to get past those crunching emotions is to be open, honest and proud you’ve recognized them and what has triggered them; allowing you to move through them. Past them. Over them.

To not only say, “I’m sorry” when wrong, but to change my behavior to avoid it from happening again.

To feel my fear, think of alternatives to remove it and to be brave enough to take action to reclaim the life I envision.

To follow my instincts even when they seem goofy or senseless.

To trust in a higher power than myself, knowing I’m never alone.

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To honor everyone’s beliefs.

To realize prestige, money and objects are just things.  They will not make you a better person; until you realize they can be powerful tools to expand your work for the greater good.

She taught me the importance of being person centered and what it truly means – which is how and why I created “Your Memory Chip.”  –  Are they Safe?, Are they Happy? Are The Painfree?

Through All These Lessons And More,

I Find I Still Want Her Back In This Physical World Where I Live.

Some days my heart aches so bad I think it will explode; or maybe, just maybe it will stop beating all together.  I logically believe and know in my heart mom is in a much better place. In heaven with my dad probably dancing and laughing with many friends and family who have also passed.

But Today, My Mind Wonders…

How Long Will The Pain Of Her Loss Last?

My heart longs for the warmth of her being.

My body reaches out to touch and embrace her, wanting to feel the calmness she always gave me.

My soul wants to be in her physical presence.  The presence that grounds me and allows me to feel strong and confident; even when weak.

My nostrils want to take in one last breath of her essence.

My mind wants to create more moments of joy with her.

Yes Today I Will Go To The Cemetery,

Where I Know She Is Not.

Mom’s soul is not limited to the small patch of grass next to her headstone.

Mom is in the air I breathe.

She is in the sunlight that warms me and ignites my growth.

She is the rain that falls, filled with nutrients and washing away the toxins.

She is the snow that chills me and brings a brilliant beauty by white washing this canvas called earth.

She is the sunset that screams at me to be amazed by our God and the beauty which surrounds me.

She is the moon that calls me to reflect, regenerate and give gratitude for the life I am blessed to live.

Mom, on this Mother’s day I honor you,

and all Mothers who have warmed a child’s heart, taught us soul lessons, loved us unconditionally as we have taken missteps, stumbled and fallen.

To all women who have been then there to pick us up and wipe us off.

Who have kissed a booboo.

Given a hug when we have felt unworthy.

Who sat silently in our presence when no words were needed to make us feel safe and loved.

To your hand, when you reached out to let us know we are not alone.

To your words of encouragement when we were down.

To your thoughtful and thoughtless

celebration when we finally got it right!

Each Mother is special.

An “Earth Angel” Guiding Us In This Physical World.

Thank you to all Mother’s, for who you are and what you do for the world at large.

Thank you Mom for all you taught me.

All you gave me.

All you continue to give me from the other side.

Your continued connection through dreams and through our souls has been a beautiful gift to me.

May Your Mother’s Day Be blessed. 

May You Hear The Love My Heart Sings For You.

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I thought I would add this short video, one of many, which means the world to me.  It’s of my mom singing in her end stages.

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By Kevin Woo

I am an unapologetic sports nut. There’s nothing better than watching a great football game. Unless, of course, you’re watching a great baseball game. You never know how it’s going to end.

That having been said, I hate soccer. It’s boring to watch players run up and down the field, and nothing ever seems to happen.

I’ve watched one soccer game in my entire life. It was the 1999 World Cup Finale. The American women’s team played China, and Brandi Chastain scored the winning goal in a shootout.

After her shot, Brandi ripped off her shirt, and pumped her fists in celebration. The accomplishment of the American team, and her pure joy made the cover of Sports Illustrated. The magazine has called that cover the second most memorable in its history.

As I watched Chastain, and her teammates celebrate I wondered how excited they must have felt in victory. It’s something few of us will understand.

There are moments in sports history that will be cemented in my mind: my first major league baseball game, my first NFL playoff game, my first NBA game, and Brandi’s shootout goal.

Seventeen years later Brandi made headlines again. This week she announced that when she dies she wants her brain donated to Boston University so researchers can study it for Chronic Traumatic Encephalopathy, or CTE.

CTE is a disease that can result in Alzheimer’s-like symptoms including memory loss, and mood swings.

It’s common for soccer players to hit the ball with their head. Research has shown that repeated blows to the head can lead to a build up in the brain of a protein called tau.

In a statement, Brandi said, “Having played soccer since I was little, I can’t even attempt to guess at how many times I’ve headed the ball. It’s scary to think about all the heading and potential concussions that were never diagnosed in my life.”

A 2013 study determined that some players head the ball up to a dozen times a game, sometimes while the ball is traveling at 50 mph or faster. Even worse, players sometimes head a ball up to 30 times in practice.

Brandi is involved with a group called, Safer Soccer, which prohibits kids under 11 from heading the ball, and limiting heading for kids who are between the ages of 11 and 13.

I wonder if Brandi knows more than she’s letting on. The cynic in me thinks that the timing of the announcement is odd.

Brandi is an American icon. I want her to continue to be an ambassador for youth sports. Her joy and exuberance is forever captured in that photo.

I hope that the cynic in me is wrong, and that Brandi will continue to live a long, and healthy life. If she does have signs of Alzheimer’s disease, I for one am doubly proud of her for leaving her brain to the researchers at Boston University where her greatness will live forever.

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The Drawer of Memory

The Drawer of Memory

This is an interesting film. 

I’d love to hear your thoughts on it.

Just write us a note via the comment section.  Thanks!

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Neuropsychologist, Dr. Mosch talks with @AlzSpksRadio

Neuropsychologist, Dr. Mosch

Talks With Alzheimer’s Speaks Radio

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Today Alzheimer’s Speaks Radio talks with Dr. Mosch to learn more about what exactly Neuropsychology is and how it can help those living with dementia.  We also  discussed dementia and environmental impacts.

Contact Information:

To Email Dr. Mosch:    soniamosch@gmail.com

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Life, Changes, and Family

Life, Changes, and Family

By: Michelle Remold

We all know life is one big learning experience. As I was preparing to write this post, I sat down and re-read the papers I wrote in college for my “Perspectives on Death and Dying” class. While sifting through papers I came across the paper I wrote after reading The Wheel of Life: A Memoir of Living and Dying by Elisabeth Kübler-Ross. In this paper we had to pick a quote from the book that stood out to us and state why. The quote I chose was from page 18 and it was: “Life is like going to school. You are given many lessons. The more you learn, the harder the lessons get.” This quote spoke volumes to me last week when I read it, the same way it did back when I read it for the first time.

As kids we are sometimes blissfully unaware of the things that are happening around us. However, as we grow up we start to learn lessons that shape who we will become and everyone experiences something different. My first “lesson” I learned was Alzheimer’s. Being young when my grandpa was diagnosed, I didn’t understand the disease. I just knew that I wanted to connect with my grandpa and I would eventually, as I got older, educate myself as much as I could on the disease.

The “lesson” that followed Alzheimer’s was change, which can be a hard lesson to learn. Everything changes, it doesn’t stay the same. Alzheimer’s has a way of progressing in ways you never imagined. Growing up, I knew Alzheimer’s was changing my grandpa, but everything else appeared to remain static. Suddenly you realize that things aren’t actually static and you wonder how you missed all the changes that were happening. People moving, getting married, hitting life milestones, and then you realize that you are not the only one getting older, everyone else is too which leads to the ultimate change in life, the death of a loved one. Death….it is the hardest lesson I have learned to date. I still remember the first death that truly had an impact on me like it was yesterday. It changed me, it changed my life, and it taught me a lesson I needed to learn. My grandpa’s death was the second close death I experienced. Through this I learned that while Alzheimer’s had robbed me of a grandfather growing up, it taught me so much more. Most of all it taught me love, compassion, and understanding in a capacity that I believe was greater than anything else I could have faced growing up.

Now I will touch on the third part of the title, family. I have written before about how important my family is to me. My immediate family is very small, but I have a very large extended family. My extended family is a family I am beyond grateful to have. A lesson that many people learn at some point is the importance of family and for me it has always been important. Growing up I was one of the few kids in my class who had a great-grandma and many great-aunts and uncles, I felt lucky because I had these people in my life. Fast-forward a few years and my dad’s mom now has dementia. Dementia has impacted my life once again. At some point last year it hit me that once my grandma passed away; my great-aunt will be her only living sibling. I realized that I needed to make more of an effort to visit her and her family; to make my own memories with them. I have now been to Iowa to visit them six times in the last ten months. It is time that I have come to cherish and made me realize I needed and still need to spend with them.

Truthfully, I started writing this post over a week ago and it really made me think, especially after one of my cousins passed away. This family was the same family who rallied around us when my grandma passed away in January and I watched it happen again this past week. While saying good-bye to someone you love is tough and heart wrenching, it also made my heart smile seeing the amount of love they all have for each other. Another example to me of why family is important.

Alzheimer’s brought a change into my life that I never would have expected, not only once, but twice. It helped me become the person I am today in ways that I can’t begin to describe. Change is inevitable; it might not always be wanted, but we often learn from it. As I wrote at the end of my paper, “We can take away from each experience what we are supposed to or we can decide to not accept it and miss out on what might be one of the biggest lessons we learn.” I definitely want to take away from each experience as much as I can.

So I want to thank Alzheimer’s for teaching me some of life’s toughest lessons on a larger scale; thank my family for being there through every change life has thrown my way and for being my support system as I chase my dream of helping those impacted by Alzheimer’s; and finally I want to thank anyone else who has been in my life and who has helped shape who I am today. As Flavia Weedn said, “Some people come into our lives and quickly go. Some stay for a while, leave footprints on our hearts and we are never, ever the same.” Whether it has been people or a disease like Alzheimer’s, everyone and everything has some impact on our lives and for those impacts on my life, I am truly thankful.

???????????????????????????????Michelle graduated from the University of Northern Iowa with her Bachelor of Arts in Gerontology: Social Sciences and a minor in Family Studies. She is currently pursuing her Master’s degree in Social Work with an emphasis in Aging from Minnesota State University Mankato.

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Returning to Who He Was: Richard Taylor’s Journey as an Advocate

Here is a beautiful description of who Richard Taylor was and his profound work,

by Deborah Shouse.

Returning to Who He Was:

Dr Richard Taylor

Dr Richard Taylor

Richard Taylor’s Journey as an Advocate

“If you know one person who has dementia, you know one person who has dementia.” Richard Taylor PhD and …

“Dementia has brought me back to who I was to begin with,” says Richard Taylor, PhD. “I’m more self confident in myself. I feel an intensity in the moment that I didn’t have before.”

Living the Before and After: From Professor to Unemployed to Author and Speaker

Before he was diagnosed with dementia, Richard was a professor of psychology. At age 62, he was a popular lecturer, witty, well read, with an easy manner and a welcoming charm.  But when he was diagnosed with dementia, Richard lost his professional standing, his job, his driver’s license, his confidence, and his optimism. He found himself crying ceaselessly, not really understanding why.

“I didn’t even know anything about dementia,” Richard says. “I had fears about losing control of myself. I thought the transition from one stage to another was abrupt, that a curtain would drop and suddenly I wouldn’t know the world and the world wouldn’t know me.”

To stem these fears, Richard began to write daily, capturing these thoughts and activities: he was, after all, a psychologist and used to analyzing things. Every morning, he read his previous day’s writings.

After he had accumulated a year’s worth of writing, he read some excerpts to the members of his Early Onset support group.

His group identified with his fears and feelings and urged him to take his pages down to the caregiver’s support room and slide them under the door. Richard did.

After both meetings ended, some of the care partners sought out Richard to thank him for sharing his feelings and insights. Months later, someone from Health Professionals Press called and asked if they could publish Richard’s writings. His book was titled Alzheimer’s from the Inside Out.

Turning into an Advocate and Speaker

“Since I’d written a book, people thought I seemed smart and interesting,” Richards says.

He was invited to read parts of the book.

“My introductions to my readings got longer and longer,” Richard says. “I wanted to share my dementia story, so I talked about my life and what it felt like. I’ve always felt people with dementia are the only true experts on the subject. You can imagine you’re blind, but you can’t imagine you have dementia. Dementia is so individualized as to how each person expresses it. Our brains each have different strategies.”

Soon people were paying Richard to share his insights at conferences and conventions and his speaking career began.

He starts his presentations by saying, “My name is Richard and I am living with the symptoms of dementia.”

But Richard didn’t confine his advocacy to speaking. He also worked with the Houston Art Museum and the Metropolitan Museum of Modern Art to bring an art program for people with dementia to the gallery.  Richard traveled to MOMA, learned about the program, worked with the Houston docents, and was a catalyst for bringing the program to the Houston community.

Understanding the Loss and Lack of Meaning

Imagine losing your job, your car and your sense of passion and purpose. You feel you’ll never again do the activities you love, make new friends or try new hobbies. Your life is static and boring and you feel out of place and alienated, even in your own home.

Richard believes many with dementia prematurely talk themselves into a wheelchair and into not communicating. They give up. He understands the loneliness and despair that can overtake someone living with dementia.

“Strangers start hugging and kissing you and talk louder to you and never ask for your opinion and are more effusive in their positive emotions with you. After a while, you just go along. So when people say, ‘How are you doing honey?’ I say, ‘I’m doing fine.’”

Reigniting His Purpose

Richard hopes his personal stories will inspire care partners to look for opportunities to bring more joy, connection, and satisfaction into life. He understands how important it is to feel a sense of purpose. As a debater, a professor, and a raconteur, Richard has always defined himself through his speaking and writing.

“Through my speaking and advocacy, I have reignited my sense of meaning,” Richard says. “People clap when I talk and this reassures me.”

Part of Richard’s purpose is helping care partners see their loved ones as whole and complete. He writes,  “Just because my memory sometimes fails me, just because my cognitive abilities seem to slip…please know that in my own heart and mind, I am still me. I am not becoming any less a person simply because I cannot remember like you, talk like you do, or think as you do. I am still Grandpa, and Dad, a friend.”

Richard believes, “Dementia is about living a purposeful and purpose filled life, not dying from its causes.”

Creative Sparks:

When talking with someone who has dementia, Richard has this advice:

·         When greeting someone who has dementia, say, “Hello, it’s me, Deborah.” Then pause, allowing time for a response.

·         If you don’t know how to act or what to say when you’re visiting a friend with dementia, try to learn more about what your friend is experiencing. You might ask, “What have you learned from living with dementia?” Or, “What changes are you having to cope with?”  Or, “How can I make our time together more meaningful?

·         See the person as a whole human being.

·         Look for opportunities to add autonomy, purpose, and adventure to the person’s life.

deb s bkcov love inth lland of dementiaThanks to Richard Taylor for sharing his wisdom.

Article by Deborah Shouse, DementiaJourney.org

 

 

 

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