Michael Ellenbogen adds to the U.S. Congressional Record

Our 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, 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

Meet Tom & Karen Brenner, authors of "You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care"

BRENNER PATHWAYS

By Tom Brenner, MA/Karen Brenner, MA

Tom and Karen’s Story

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

Meet Lisa Skinner, author of Not All Who Wander Need Be Lost

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.

Lisa Skinner

Facebook: https://www.facebook.com/notallwhowanderneedbelost
Facebook: https://www.facebook.com/Lisa-Skinner
Twitter: @LisaSkinner2015
LinkedIn:https://www.linkedin.com/in/lisa-paglia-skinner-05259b14

Meet blogger, Lisa B. Capp, The Day the Wheels Fell Off

By Lisa B. Capp

Everyone knows someone touched by dementia or Alzheimer’s disease.

We write, because today these diseases cannot be prevented, slowed or cured. We seek answers because their manifestation is often irrational, frightening and perplexing. And, as human beings, we continually reach from darkness to find light, whether you’re someone living with dementia or you’re caring for a loved one with the disease.

Millennials grew up watching their parents shoulder the responsibility of a grandparent’s care or worse, witness to early onset of a parent. In the absence of a cure, millennials will likely become the primary caregivers to their own aging baby boomer parents; those who possess a cruel knowing of how this disease will change their lives.

Our world has faced many health crises and with enough time; talent and resource has moved the needle on many. My hope: we can do the same one-day for dementia. My aspiration: I can make a contribution to caregivers who struggle everyday in their role. My blog shares a caregiver “survivor” story of the 18-year dementia journey I shared with my mother, Vera.

“The day the wheels fell off” refers to the day my family was left with only one option – to involuntarily commit our otherwise healthy mother to a locked psychiatric ward so professionals might stabilize her psychotic delusions and hallucinations. My mother’s case presented little evidence of the more traditional memory loss and confusion that the media conditioned me to expect.

The role of primary caregiver fell to me; it was just geography. With a family steeped in the Italian-American tradition of cross-generational care there were ongoing expectations, compounded by feelings of falling short, wrapped around a perpetual sense of guilt and conflict. My family, like others, was beset by long-term strains. But as her illness deepened, we unified in the dedication to our mother’s care.

Sharing a home with my mother after my dad’s death, decline began and nighttime always bred apprehension. Women walked across the roof in high heels piercing the ceiling where she laid in bed and winged monkeys pried at her bedroom windows. Late night screams and emergency room visits were commonplace.

From my blog:

Sentinel

As a caregiver to someone with dementia

It’s difficult to remember what they were

Before the tangles and the plaques

If I close my eyes

And push the dementia away

I see her from the seat of my bike

She’s strong and vibrant

Standing behind me

Ready to catch, if I fall

I will stay with her

Standing sentinel

Witness to this long and slow descent

# #

About the Author: Lisa B. Capp

A transformation champion working with senior leaders of business, government and non-profit organizations across five continents focused on change. I helped organizations that wanted to change their vision, their strategy, their results or their very place in the world. It proved more difficult to help myself on the transformational journey of dementia that my mother and I shared.

Website & blog: http://www.lisabcapp.com

Social Media Links:

https://www.linkedin.com/in/lisa-b-capp

https://twitter.com/lisabcapp

https://www.facebook.com/lisabcapp/

https://www.pinterest.com/lisabcapp/

Meet Barbra Cohn, author of Calmer Waters

I spent a decade caring for my husband Morris, who died from younger-onset Alzheimer’s disease in August 2010. Afterward, I was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” to help other caregivers feel happier, have more energy and time for themselves, sleep better, feel more relaxed and confident, and experience inner peace . . . because I had become an expert caregiver. I felt that if I didn’t reach out to help others my experience would have been for naught. 

I was in a unique position to write “Calmer Waters” because I’ve been a professional writer for the past 36 years and writing is the easiest way for me to express myself. Since I write for manufacturers of nutritional supplements, I am continuously researching the latest and greatest “silver bullets” to improve health, prevent disease and illness, and support cognitive function. 

Writing “Calmer Waters” was based on both my personal experience as a caregiver and my professional experience as a writer/researcher. 

How is “Calmer Waters” different? 

“Calmer Waters” is different from other books for the Alzheimer’s and dementia community. It includes my life story, inspirational essays and rituals from spiritual leaders, stories from family caregivers, and twenty healing modalities from renowned experts that can be practically incorporated into a daily regimen. An added bonus is that both care partners —the caregiver and memory-impaired individual—can use most of the healing modalities, allowing for a stronger connection between the two. 

Response to my book: 

The feedback I’ve received has been very positive. Readers have reported that the book is an excellent resource for all caregivers, regardless of the health issue they are dealing with. Non-caregivers are also enjoying “Calmer Waters” and are using it to improve their general health. 

Support for caregivers 

Personal accounts of the journeys that nine caregivers embarked on with their loved ones illustrate the challenging medical, financial, emotional, and social roadblocks that accompany coping with Alzheimer’s and dementia. 

A rare blend of storytelling and practical and spiritual advice, “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” offers an uplifting account of the strength of the human spirit and a testament to the love and dedication of the 15 million Americans caring for a memory-impaired relative or friend. 

Author’s bio 

Barbra Cohn holds a Master’s degree in professional writing, a BA in English, a BA in Religious Studies, and a Certificate in Nutrition from the Bauman College of Holistic Nutrition and Culinary Arts. As a nutrition educator, she offers nutritional support to caregivers, guiding them to make healthy food and lifestyle choices. Barbra has been a professional writer for 36 years, and has written hundreds of health and travel articles for national, regional, and local publications. She lives in Boulder, Colorado where she and her late husband raised their two children. She is a devoted grandmother to three grandchildren and will soon welcome a granddaughter into the world. In her spare, time Barbra enjoys hiking in the Rocky Mountains, and dancing salsa, tango and Israeli folkdance. 

Social media links: 

@healthwriter1 (twitter) 

Barbracohn.com (thehealthcaregiverblog) 

www.cohnwritingsolutions.com

healthwriter1@gmail.com

“Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” (Blue River Press, 2016, ISBN 978-1-68157-014-3-51699, $16.99, http://cardinalpub.com/?product=calmer-waters) 

Amazon author’s page: 

https://www.amazon.com/Barbra-Cohn/e/B01FX3RK74/ref=ntt_dp_epwbk_0