AlzAuthors: Michael Ellenbogen adds to the U.S. Congressional Record

Our AlzAuthors friend, Michael Ellenbogen, who lives with early onset Alzheimer's, wrote the following piece which was added to the U.S. Congressional Record on September 21, 2016.

I am so thankful to be still here. Many of my friends who were living with dementia have died and others are no longer capable of speaking. I am one of the lucky ones. My Alzheimer’s is progressing very slowly. While that is good news it is also bad news. I will be forced to endure the worst part of this disease even longer than most. Knowing what I know now, that will be like being tortured until I die. While I try to stay positive these days and live life to the fullest, I am in pain every day from the frustration of not being able to be the person I was once. I continue to decline in to a childlike state.

Dementia, including Alzheimer’s, is the most expensive disease we face. It is costing us more than heart disease and cancer. It is the third cause of death in the United States; more than 500,000 people die from Alzheimer’s each year! We all get caught up in the big numbers, so I will break them down so they are more relatable.

• 41,666 is the average monthly death rate
• 9,615 is the average weekly death rate
• 1369 is the average daily death rate
• 57 is the average hourly death rate.

This is equivalent to almost three 747s crashing every day. Yet there is much neglect and discrimination regarding funding for Alzheimer’s and related dementia research.

Preventative measures for breast cancer, heart disease and HIV have all made tremendous progress since the federal government made significant investments into research. Comparable investments must be made for dementia so we can accomplish the same successes, while saving millions of lives and trillions of dollars.

If we don’t act now this disease has the potential to bankrupt this county. This is the most expensive disease in America. In 2016 $236 billion will be spent on Alzheimer’s in terms of care and medication, with Medicaid and Medicare spending $160 billion. And unless you take action, the cost to Medicare alone will increase 365 percent to $589 billion by 2050.

Our investment today will lead to huge savings for the government and public, not to mention the lives saved. People with dementia are faced with discrimination at many levels and they lose their civil rights. That must change; we are still people and deserve to be treated as such. A person with cancer would never be treated the way we are. We need you to start making more of an effort to educate the public and restore our rights.

A few years ago I would have said I had no hope, but that has changed to 2.5 percent. I do believe we are closer to a cure today based on what has been learned from all the failures. I am so grateful that the budget has been increased to $991 million, but that is still far short of the two billion dollars that was said was needed years ago.

In my opinion we need a czar for dementia just like Vice President Joe Biden is to cancer and it sure worked for HIV. We are definitely at the tipping point. You have the power to make this happen. Please, I implore the House of Representatives, the Senate and the respective appropriations committees: Make the hard choices; increase funding for Alzheimer’s disease by at least one billion dollars. Do everything necessary to ensure that Alzheimer’s disease gets the exposure, commitment and funding necessary to change the course of the disease.

If you have not yet been touched by this devastating and debilitating disease it’s just a matter of time.

Regards,

Michael Ellenbogen

Michael Ellenbogen – Advocate for all of those living with dementia, who can no longer speak, write, or have passed.

Michael Ellebogen is the author of From the Corner Office to Alzheimer's

Guest Post: Author Mehreen Ahmed on The Therapeutic Nature of Writing

by Mehreen Ahmed 

Why do people write? The answers certainly vary from writer to writer, but writing evolved alongside a popular and a well-established oral tradition. Traces of the earliest writing system was first found in Mesopotamia, Iraq around 3200 BC. However, there is much debate around this, as some believe that the earliest script was found in South India. Wherever it was, it is obvious that only one form of communication did not suffice. Valuable information would often be lost because of a lack of documentation. Preservation of data in scripted words proved to be more lasting than the spoken medium. The archives today would be empty otherwise and history would remain forgotten. 

A friend of mine had once told me how writing got her through many a troubled situation. There was a time when she felt totally helpless because of her husband’s acute anxiety. At this juncture in her life, it was writing that helped her tremendously. She often sat down at the computer and jotted random, non-linear thoughts without caring much about grammar, or punctuation. or spelling. She continued this for a while until a pattern emerged. An eventual plot began to show. That plot turned itself into her first book. This gave her pleasure beyond measure as a new window of opportunity and happiness opened for her. One book then led to many books. 

If sad thoughts can be written in words, then sometimes they can help in difficult situations. That is the whole point of keeping a diary. My friend had no idea that writing could bring her such sweet relief. In a way, writing acted as her counselor or a psycho-therapist by giving her a platform to vent her unhappiness. Her life changed dramatically after that. She became a writer and found a way to help other emerging writers as well. 

How does writing act as therapy? There is no specific research guidelines to prove exactly what happens to the human brain when it undergoes such activity. Researchers have tried to find out brain functions and effects of expressive writing. Advances in psychiatric treatment (2005), Vol 11, 338-346, published an article written by Karen A. Baikie and Kay Wilhelm. A study elaborated in this article shows a correlation between writing and mental and physical health benefits. Participants were asked to write about their deepest thoughts and feelings of traumatic situations. They were also asked not to care about grammar, spelling, and punctuation,. This research found long term benefits in both emotional and physical health outcomes: a reduction of mood swings and depressive symptoms such as withdrawal. And in physical health a notable reduction of blood pressure. 

In a nutshell, therapeutic effects of writing were found beneficial to human health, generally. But even without delving into too much scientific detail, we can speak from our own experience that writing is good for the soul and for the mind. It gives us pleasure just to take flight on the wings of imagination; creating fantasies, otherwise impossible. Thoughts that would leave indelible marks long after we have passed away. Imagine if Shakespeare had not written a word. Not only would there be a vacuum in the literary world, but what a lonesome and boring place this would be. 

And as imagination bodies forth

The forms of things unknown, the poet’s pen

Turns them to shape and gives to airy nothing

A local habitation and a name.

-William Shakespeare, Midsummer Night’s Dream

About the author

Queensland writer, Mehreen Ahmed has been publishing since 1987. Her writing career began with journalism and academic reviews and articles. Her latest work, Moirae, is available on Amazon.

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AlzAuthors: You Say Goodbye and We Say Hello - The Montessori Method for Positive Dementia Care

By Tom Brenner, MA and Karen Brenner, MA

The couple, a man and woman, stood just outside the door of the Scandinavian Home, arguing. The autumn leaves from the towering elms on the grounds of the nursing home swirled around their feet as the cold wind snatched their voices away.

“I told you, Tom, I don’t want to go back today. I am afraid of some of those people. You know how much I hate scenes and last Saturday Bridget yelled at us and told us that nobody wanted us there. I just froze when she took off her slipper and started hitting that other woman on the head with it. You knew what to do, how to calm her down. Anyway, I don’t know what I’m doing here. I’m just a Montessori teacher. You’re the gerontologist, you’re the specialist on aging, you’re the one who spent the last six years researching dementia. I’m not going in there again!”

He took her hand. “I know this is kind of scary sometimes, but what about the other thing that happened last Saturday? You know, when you had everyone singing together, even Don, who never says a word. He was singing and clapping and for a few minutes, he was connected again. This is why we’re here, this is what we do.”

“I know, Tom. I know that’s what we’re supposed to do, to help people reconnect, but I’m so much more comfortable in a room full of little kids. You’re the expert, not me. I don’t know what I’m doing.”

“Come on, Karen, we’re in this thing together. We’ll learn how to do this as we go. We’re a great team, aren’t we? I mean, we’ve been married forever, we’ve raised great kids, so we can do this together, too.”

“Right, a great team. If we’re so great at this, how come Bridget hates us? Anyway, we argue all the time, we’re arguing now. What makes you think we can work together?”

He picked up her hand again. “Because we are meant to do this, because we beat cancer together, because I can’t do this without you.” He pushed the door open and pulled her in with him and with his lopsided smile, whispered to her, “Anyway, Bridget doesn’t hate us, Bridget hates you!”

That was the way we began our work in dementia care, learning from our mistakes, finding out what worked and trying to understand why it worked. We have had the enormous good fortune of meeting people with dementia who were kind and patient and generous with us. We have also met lots of "Bridgets," people who want nothing to do with us, who are difficult, sometimes violent. We’ve learned from these hard cases that if we don’t give up, we can find a way to reach even them.

Through field-testing the Montessori Method for dementia care, we found what absolutely would not work and we discovered what worked really well. For us, success is measured in a smile, wide awake eyes, laughter, some sign, no matter how small, that we are helping people with dementia connect once again. We have learned to be careful observers, to see the tiny step forward, the small improvement, the flash of joy. We know that we cannot cure the condition or bring back a fully functioning person, but we can share with you our experiences of discovery and connection.

We’ve taken the dementia journey with many, many people and their caregivers, both professional carers and family members. Our work is designed to help caregivers regain their footing when they falter, to encourage them to celebrate each tiny victory, to remind them that caregiving is a calling of the highest order. When we care for someone we are giving the greatest gift of all: our time, our love, our best effort.

About the Authors

Tom Brenner is a gerontologist who specializes in creating dementia care programs that are strength-based and positive leaning. His wife, Karen, is a Montessori educator who co-founded a Montessori school for children who are deaf. The Brenners have worked together for the past twenty years researching and implementing the application of the Montessori Method for positive dementia care.

After years of working directly with people living with dementia and their caregivers, the Brenners published a book about their work, You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. Tom and Karen travel throughout the United States presenting workshops, training programs and speaking engagements about their uplifting and positive approach to dementia care.

Contact Tom & Karen

Email: tandkbrenner@gmail.com
Twitter: @BrennerPathways 
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New Release Spotlight: Keely Brooke Keith's Aboard Providence

A voyage aboard Providence changes Jonah’s plans, but can it change his heart?

In November 1860, Jonah Ashton boarded the Providence with a plan to escort his family to their new settlement in South America and then return to medical school in Pennsylvania before rumors of Southern rebellion erupt into all-out war. What he didn’t count on was getting lost at sea… and Marian Foster. When they finally reach land, Jonah makes a startling discovery that changes everything, but will it change his heart?

Aboard Providence ~ Snippet

He stepped forward, closing the distance between them. “Yes, of course.”

“Since you will be our physician now—”

He lifted a hand and whispered, “It is only temporary.”

“Yes, of course,” she replied at an equally quiet volume. “But since Doctor Ashton is injured, my mother will need you if...” It was too difficult to say aloud. She waited for the lump in her throat to release.

Jonah’s brow furrowed. “Do you think there is something wrong with your mother or the baby?”

“No... not yet.” She didn’t mean to reveal her doubt, so she tried to cover with a mild grin and optimistic tone. “I’m sure everything is fine.”

He slipped his hands into his pockets, emitting casualness, and inclined his head toward her, engendering concern, but he continually glanced at the stairway behind her. “Marian, I know about your mother’s medical history. She has asked my mother to serve as midwife again. I won’t intervene in the delivery unless it becomes necessary.”

Marian nodded, comforted by his understanding of the situation. “If it does become necessary, which I pray every waking moment that it does not, but if you must intervene, are you comfortable with that?”

“I am fully trained in obstetrics if that is what you mean.”

“No, it isn’t. It’s good to know, but I’ve been there with her during her last three deliveries and—” Her voice cracked. She looked down at the empty water pitcher in her hands. “Those babies were my siblings—two girls and a boy—all born dead. Mother is thirty-eight years old now and pregnant for what she and my father swear is the last time. She depends on me and I’ll be with her for this delivery too, but if this baby is stillborn...”

Jonah’s brown eyes glanced at the stairway again then back at her. He put his hand on her shoulder, neither drawing her closer nor holding her off. “If she goes into labor before my father resumes his duties, I will do everything in my power to help her and the baby, I promise.”

“Thank you.” Marian began to look away, but Jonah held her gaze. She felt the heat from his hand through the fabric of her sleeve and hoped he intended more than comfort, but that hope felt wrong, considering the seriousness of their conversation. He was only reassuring her with a friendly touch.

Ashamed for being infatuated with the man who would be her mother’s doctor, she scolded herself for her immaturity. He wasn’t staying with the settlement, so falling in love would only lead to heartbreak. But no matter what she told herself, standing near him, alone and connected in the dark hallway on a gloomy afternoon, she was fully aware that if he even breathed a hint of attraction to her, every joint in her body would go limp. The empty pitcher she held would hit the floor with a crash, the room would go round as her dizzy head spun, and she would soften into a puddle of spineless flesh and melt down the crimson carpet of the staircase, one achingly grand stair at a time. When she reached the bottom step, all that remained of her would be a calico dress, shards of the broken pitcher, and her teeth clamped in a blissful smile.

Watch the book trailer here.

What other authors are saying about the book:

“A delightful adventure reminiscent of Swiss Family Robinson, Aboard Providence is one of those novels that will stick with me because I feel I've lived it. A captivating, well-researched, and deftly written tale I can confidently recommend to a wide range of readers.” –Heather Day Gilbert, author of Amazon Norse bestseller God's Daughter

“With vivid settings and multi-layered characters, Keely Brooke Keith whisks her readers off on a page-turning journey, not just across the ocean, but within the heart. You won’t be able to put Aboard Providence down until the final word is read and then you will long for more.” –Brenda S. Anderson, author of the Coming Home series

“A blend of history and romance with a compelling inspirational message, Keith expertly weaves an intriguing tale. Fans of the Uncharted Series won’t want to miss this journey.” –Heidi McCahan, author of Unraveled

“Keely Brooke Keith is a master storyteller, weaving adventure, love, and wonderful characters into a vivid story that will take readers on an unforgettable voyage to a new place. Full of inspirational messages and tales of God’s love, readers will find themselves longing for more. Keely’s story teaches all of us that the journey is just the beginning!” –Christina Yother, author of the Hollow Hearts series

Purchase Aboard Providence

CrossRiver Media

Amazon

Or order from your favorite bookstore!

About the Author

Keely Brooke Keith is the author of the Uncharted series (Edenbrooke Press) and Aboard Providence (CrossRiver Media). Her novels are known for blending genres in unconventional ways. When she isn’t writing stories, Keely enjoys playing bass guitar, preparing homeschool lessons, and collecting antique textbooks. Originally from St. Joseph, Missouri, Keely resides with her husband and their daughter on a hilltop south of Nashville where she dreams up stories, hoping to encourage, comfort, and inspire readers. She is a member of ACFW.

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#AlzAuthors: Lisa Skinner, Not All Who Wander Need Be Lost, Stories of Hope for Families Facing Alzheimer’s and Dementia

by Lisa Skinner

 

I wrote the book, Not All Who Wander Need Be Lost, Stories of Hope for Families Facing Alzheimer’s and Dementia for those who are coping with loved ones afflicted with a dementia-related illness, and crumbling with the anguish of helplessly standing by, watching your loved one decline, and not knowing how to make it better for all who are affected.

I have been in your shoes so many times. As a matter of fact, I have personally watched 7 of my family members go through all the stages of a dementia-related illness through the end of their life.  The irony of my story is that in addition to having 7 family members afflicted with dementia, my 17 1/2 year -old cockapoo, Oliver, has also been diagnosed with doggie dementia! I believe this is my calling, and why I want to help you through your turbulent journey.

My name is Lisa Skinner.  I am a behavior specialist dedicated to helping families understand the stages and related behaviors that are associated with dementia-related illnesses.

My first experience with dementia was when I was a teenager and my beloved grandma began displaying some pretty bizarre behaviors.  Her doctor diagnosed her with what was referred to back in the 70’s as senile dementia.  She displayed a gamut of behaviors including paranoia, hallucinations, and delusions, all of which are symptomatic of dementia; however, not all people who suffer from dementia display all these behaviors. Everyone is different. Everyone displays different symptoms, and the cause of the dementia can be a result of over 50 different illnesses or conditions. Alzheimer’s disease is the number one cause of dementia, but there are many other causes, as I will discuss.  

My grandmother believed there were birds nesting in her mattress; rats running along the walls; people breaking into her home and stealing things, as well as men trying to kill her. She would call the police everyday and report one or more of these occurrences. Finally, one day, they got a hold of my mother and told her to do something with her, as she was a nutcase! I was so outraged! My grandma wasn’t a nut, she had an illness! Didn’t they get that? Apparently not, and neither did most other people, including the doctors. Not much was understood about dementia then. We were at a loss for help and understanding of what was happening to my grandma, and how to manage her unpredictable day to day behaviors.

Let’s fast forward 40 years now. I have worked in the senior living industry since 1996, and have helped thousands of families understand how to communicate with their loved one who has dementia. I have set up programming in dementia-care homes, as well as trained staff on how to care for those with dementia. I also hold an administrator’s certification through the Department of Social Services with the State of California. While working on a master’s degree in Psychology, I made the decision to specialize in dementia-related illnesses and teach families how they can have a better-quality relationship with their loved ones through education. Working in the aging care industry, I became aware that there were still very limited resources on this subject; although there was a dire need for families to comprehend it.

The greatest obstacle for family members, caregivers, and the ones afflicted with dementia is how to communicate effectively with one another. It’s a learning process, but one that can be extremely effective and bring joy to the lives of all.

Please join me as I share the stories of real people and real situations of those who have endured the difficult journey through dementia. My goal is that you will be able to relate them to your own situations and benefit from the experiences of others.  Many of my readers have told me that they wished they had this information when their loved one had dementia, but that the information has given them closure now that they have a better understanding of what was happening to their loved one, and how all the behaviors that they witnessed finally make sense. 

Purchase Not All Who Wander Need Be Lost 

 

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