Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.


Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Wednesday, May 31, 2017

Meet Paul M. Hornback, author of God Still Remembers Me


By Paul M. Hornback

GOD STILL REMEMBERS ME

I’ve been living with early onset Alzheimer’s disease for over seven years. Soon after my diagnosis, God kindled within me a deep desire to do something positive for people who were struggling with this disease. I wanted to help them maintain their faith as they face the challenges of living with early to mid-stage dementia.

My faith has always been strong and God has blessed me in so many ways. After my diagnosis, I knew God still had a plan for my life and would continue to allow His grace to flow through me. His grace enabled me to write words of encouragement for people struggling with dementia.

I have always loved reading devotions, so it seemed natural to start writing devotions centered on living with Alzheimer’s. As I started writing, God seemed to guide my thoughts and my hands as I typed devotions filled with encouragement, peace, contentment, joy, hope, and faith.

God Still Remembers Me is unlike any other book written by an Alzheimer’s patient as it is filled with humor, joy, honesty, and praise for a God who helps me every day. In its pages you will find new coping strategies for the changes going on in your life, thoughts on planning for the future, personal methods for fighting depression, ways to share the news of your diagnosis, and positive Scriptures to rekindle your faith and draw you closer to God.

Living with this disease is not all doom and gloom as many books tend to profess. I continue to have many joys in my life, lots of activities that keep me busy, and a peace that surpasses all understanding as I deal with the daily demands of dementia. In this book, you will discover it is possible to be at peace with Alzheimer’s as you trust in the Lord.

I remain positive and faithful knowing all things work to the good for those who love the Lord and are called according to His purposes. I pray you will find encouragement in the pages of God Still Remembers Me and you will draw closer to the Lord as you read. God is my sole source of strength, hope, peace, joy, comfort, and contentment along my journey with early onset Alzheimer’s disease. He can be the same for you!


ABOUT THE AUTHOR

Paul Hornback has faced challenges as a United States Marine Corps pilot, government engineer, lay speaker, and church leader but the greatest trial was his diagnosis of early onset Alzheimer’s disease at the age of 55. With courage and positivity, Paul has turned a seemingly disastrous event into a faith building milestone while battling Alzheimer’s.

Paul has been a tireless advocate for the Alzheimer’s Association to raise awareness about the disease. He has spoken across the country about living positively and faithfully with the disease. He has served as a National Early Stage Advisor for the Alzheimer’s Association and currently serves as a member of the National Board of Directors for the Association.

Paul has been featured in numerous videos for the Alzheimer’s Association and the University of Kentucky dealing with clinical trial research and living with the disease. He has also participated in two clinical trials for Alzheimer’s. Paul is part of a long-term study with the University of Kentucky that chronicles his steady decline and upon his death receives his brain for further research into the impacts of Alzheimer’s disease. Paul and his wife live in Hodgenville, Kentucky and have three grown children.

Paul’s blogsite: faithfulfoggyliving.com

Wednesday, May 24, 2017

Meet Poet Tracey Shorthouse


When I was first diagnosed with early onset Alzheimer’s Disease and Posterior Cortical Atrophy in 2015, I wanted something to focus on. All my life I have helped others through being a nurse, and I still wanted to do that.

The brain needs stimulation to keep going, so after the initial shock at being diagnosed and the relief that it wasn’t MS as what I first thought and feared, I took stock of what I could still do, and if I couldn’t do something I persevered until I relearned old skills. I had an occupational therapist who used to come and see me, and she got me in touch with groups that promote positivity in dementia. So I joined The SUNshiners, a network for people with a diagnosis of dementia living in Dover Deal and Shepway, Kent, UK. I also attend meetings for the Dementia Action Alliance when I can, and get involved with other things, like talks.

I talk to post diagnostic groups - people who have recently been diagnosed with dementia - and the public to bring awareness that dementia can affect all ages, not just the elderly. Last May, I gave a talk to the local police. I also go to a creative, inspired writing group weekly. I started writing a blog on Facebook, as a way to keep a journal and to help others in the process.

I started writing short stories at first to keep my brain active, but I found them too complex to carry on. So instead I started to write poetry. At first it was cathartic to write about my dementia and get it out of my system, but I didn’t want to focus on it as dementia is only a part of who I am. It doesn’t define me. So I wrote about nature, life, and then stories that came into my head as poems.

I didn’t know I was going to write a book until I showed a friend one of my poems and she suggested getting it published. Then she saw how many poems I had and it stemmed from there. I found a self-publishing company who took an interest and read my poems.

I was excited when the book was finished. I chose the cover because I love nature, especially trees and the different seasons. The leaves disappearing gradually are an indication that my brain cells are disappearing slowly, and at the end the leaves are on the ground. With nature, nothing goes to waste, and there is always a chance for things to regrow, or in my case relearn. The photographs inside are my own, taken from the area where I live. Nearly everyone who has read the book has given me such positive feedback. It’s a blessing.

I wanted the book to show anyone with a medical condition that they don’t have to give up. As a nurse, I saw too many people give up when they got their diagnosis. Life is for living to the best of our abilities. For me, it’s precious, so I am hoping that people will take what they need from the book in their own way.

A Poem from I Am Me

Dementia and Me

Sometimes I think there is a race

Between my dementia and me

Although it is going at a slow pace

I still wish I was free

My memory used to be hot

Especially with knowledge and spelling

Now I am really not

My brain is its new dwelling

It is like having an alien residing in my brain

At times it takes control

And I feel a lot of strain

As my memories unroll

What did happen yesterday or last week

I really don’t remember

I sigh as everything looks bleak

Since I was diagnosed in December

I want to yell and scream

And tell it to go away

Maybe it is all a dream

But then again I know it will be okay

Because I am a fighter

And in control

And have become a writer

Even though I am not on a pay role

I retired as a nurse in May

Even now that is becoming a distant memory

But at least I can be gay

But the dementia still takes my energy

I hate feeling tired all the time

Having to pace myself

But I am still in my prime

Even though the books remain on the shelf

I miss reading and listening to music

Remembering and concentrating is really hard

But at least I am still lucid

And still write the odd card

My perception of things is often off

I stumble and my speech is sometimes slurred

I worry that people might then scoff

But at least my vision doesn’t get blurred

Damn you dementia! I want to yell

I want to get cross and stamp my feet

But it is only a short spell

Then I feel a bit of a cheat

As the dementia has no voice

It can neither see or hear

And I know I have a choice

But sometimes I wish I was a seer

To see how long I have before the dementia takes over

But I think I wish to live my life to the best of my ability

I could never be a rover

And at least I prefer some tranquillity

So although my life is a fight

Between the dementia and me

I will win just out of spite

And kick the dementia with glee

©Tracey Shorthouse 2016

Follow Tracey Shorthouse on Facebook

Purchase Tracey's Book on Amazon

Wednesday, May 17, 2017

Meet Celia Koudele, author of The Little Book for Alzheimer's Caregivers


By Celia Koudele


This book was my legacy for the next generation, putting in writing as much as I could about my experience helping caregivers of dementia patients.

My mother, grandmother and aunt all died from a type of Dementia, mostly Alzheimer’s.

I became my mother’s caregiver after my Dad died of cancer at 75. When my Mom had Neuropathy, the doctor at Mayo’s did a memory test and concluded she too would probably get Alzheimer’s. Even with our family history, we went through that period of denial.

I also went to work at the local Alzheimer’s Association, thinking I would learn more and be there to hear about a cure first-hand before I too possibly developed the disease. I was a Help Line Specialist and learned from over 65 callers a month about the many journeys of Alzheimer’s. My job was to listen, comfort, educate, and try to give them ideas to make their daily life better.

I AM PASSIONATE ABOUT HELPING FAMILIES AFFECTED BY ALZHEIMER’S.

Fast forward several years ago and I realized I had lots of ideas from my own experience of caregiving my mom and helping others. These solutions, experiences, and ideas would die with me if I didn’t share them with others. My goal in writing this book was to help other Alzheimer’s families learn from my experiences and ideas to make their life with Alzheimer’s easier in any way. People don’t know these behaviors can happen, what to do once they have a diagnosis, or how to talk and interact with people with dementia. Ignorance is not bliss. It can happen to anyone.

I knew what it feels like to be exhausted, afraid, and sad because the Mother I knew was slipping away, and I didn’t have the energy or knowledge to make it better. This Alzheimer’s Caregivers book is short and simple. When I began the journey of caregiving, “The 36 Hour Day” was a popular resource, but it was a large book, and by now I was caregiving for my mom and also my mother-in-law, so there was little time to read all of that large book! My book is purposefully “Little” because caregivers are exhausted, busy and need an answer to their problem quickly. It covers the emotions, daily living problems, and the big decisions about placing them in a facility. It is for all of you pretending they “aren’t that bad” while quality time slips away. Denial hurts everyone. There are ideas to cope with anger, bathing, and wandering. Always remember no one is promised forever, we all get one day at a time.”

I often share my books with doctors, people in stores, friends, strangers, and anyone struggling on this journey. No one should have to fight this disease alone with no help or support. I also often find support groups and church groups to speak to and to help with the many facets of this. God Bless them.

I receive feedback from Amazon, social media, and friends who have purchased the book and come back to buy more. Sometimes I give presentations at assisted living centers and support groups and people come up to ask questions and purchase the book.


Social Media:


Instagram: Alzcaregivers


Wednesday, May 10, 2017

Karen Kaplan is Back with a Sci-Fi Dementia Novel

By Karen B. Kaplan
Perhaps it is not often that you come across science fiction that is (1) gentle and not full of weapons and nasty robots, and (2) includes a character who is one of the first with dementia to get cured of the disease. There are so many other aspects of reality to ponder, such as how robots might help or hinder grievers, it is a wonder that science fiction writers have not provided more material on such things. (Have you ever noticed that the Star Trek crew does not include a spiritual counselor?) As a healthcare chaplain, I have been curious about what it might be like to be cured of Alzheimer’s or other forms of dementia. Virginia Boyden, financial planner of the main characters, is one of those first lucky persons to be a “dementia returnee.” Virginia shares what it was like to get dementia, as well as what happened on the return trip. A temporary detour to complete health does arise, but Virginia figures out how to handle it.
Perhaps reading about dementia in upbeat fantasy might help us indulge in the comfort and hope that such fantasy can provide. It offers a different perspective, especially when the main characters Gomer and Muriel Ackerman try to grapple first with their financial planner’s decline, and then the issues that arise as she recovers. Here is an excerpt:
“Even a recluse knows that around the year 2056 patients with dementia had become as obsolete as doorknobs. But only a precious few individuals are aware of how the initial returnees from this malady reassembled their minds…
“An interviewer asked Virginia about the first half of her journey, when she was becoming more and more demented. She reluctantly described this frightening time: ‘I felt like I was a wall, and all the pictures on it and then even the wallpaper fell off, and then the wall itself wore down down down to the insulating material within it, and even that started coming apart. And then all the stuff out there coming at me such as sounds and being moved around and drinking coffee just passed through that material as it became softer and softer, and thinner and thinner. It was like everything was passing through or around me and I was not sending anything back out… But make no mistake: now I’m a solid colorful wall, decorated with photos and designs, and with great big bay windows that open to a field of newly blooming sunflowers waving at me.’”
About the Author
Karen B. Kaplan has an unusual background for a science fiction writer: she's a hospice chaplain and instructor of English as a Second Language. She has always wanted to write sci-fi with a compassionate touch, rather than portray the wars writ large and nasty robots found in dystopian scenarios. In her most recent book, Curiosity Seekers, Kaplan cooks up a blend of irony and an exploration of spiritual values such as privacy and the need to be heard. She enjoys surprising and entertaining readers by finding humor in the most unexpected places. In one of these interrelated stories, a grieving man tries to circumvent his grief by ordering up a robot that looks and acts like his wife. But complications ensue when her sexuality as well as other traits differ from the “original” mate. While serving hospices in New Jersey and New York for seven years, Kaplan visited over 4,000 patients and their families from all walks of life. That is when she wrote her first book, Encountering The Edge: What People Told Me Before They Died. Even in the context of hospice Kaplan is always alert to quirky anecdotes. “I always have an eye out for it,” she says. “I remember a funeral where the deceased’s niece looked at the grave and said, ‘Auntie, you sure have been fussy about apartments. But you’d better be satisfied with this one, because it’s gonna be your very last.’” When she was ordained in 1992, Kaplan became one of the first 200 female rabbis worldwide and earned board certification as a healthcare chaplain in 2007.
Follow Karen. B. Kaplan
Purchase Curiosity Seekers on Amazon




Wednesday, May 3, 2017

Meet Rebecca Thesman, author of Sometimes They Forget



By RJ Thesman 

How a Long-Distance Caregiver Learns to Cope

When the memory thief first visited our family, we didn’t think much about it. Mom was, after all, fully capable of caring for herself and she was in good health.

But gradually, ever so subtly, the memory thief began to take from her the basics of life: where she stored her pots and pans, how to read a recipe and produce the finished product, how to find her way home from the grocery store.

The resulting prognosis surprised and challenged us. Alzheimer’s Disease plus an inoperable brain tumor – no cure, no solutions. Mom could no longer stay in her home.

My siblings and I worked together, hoping for an easy transition, but Mom has always been an independent, stubborn woman. It was the doctor who had to be the bad guy as we took away her car keys, “The doctor says you can no longer drive,” then as we found a beautiful assisted living facility, “The doctor says you cannot live alone.”

We are now four years into the process. Assisted living has become Mom’s new normal and we are prepared for the final stages of Alzheimer’s Disease.

How do the children and grandchildren acclimate to this new normal? How can we somehow learn to cope with what has happened to the matriarch of our family?

As the long-distance caregiver, I found my coping skills through writing: filling my journals, using my blog posts for therapy and writing the Reverend G trilogy –http://amzn.to/1rXlCyh.

But I needed more of a mechanism to record the research I found and the practical tips we learned about Alzheimer’s. My background in nonfiction writing and essays provided the perfect medium to help me process my emotions.

So I continued to write, creating an online support group of other caregivers and empathic souls who prayed for my family. Then I compiled my posts into a collection of essays and meditations, designed specifically to provide hope for caregivers.


From the brief history of our family, to the explanation of how I found hope in the cemetery, to practical tips for caregivers and lessons about patience – “Sometimes They Forget” has become my new forum for describing my journey through this brutal disease.

Within a few hours of the online launch, readers ordered the book, then asked me when it would appear on Kindle, assured me they wanted to write a review. Already, this book has struck a cord with readers who know a caregiver struggling with the Long Good-bye.

My goal is to provide information, but also to be vulnerable enough so that other caregivers will know they are not alone and the emotions they feel are valid.

Perhaps “Sometimes They Forget” will be the book that is highlighted beside the bed of an Alzheimer’s caregiver – when the 36-hour day becomes a nightmare yet the purpose of the caregiving still feels significant.

To all the caregivers and their families, hope is possible – if only we reach for it.


Link for “Sometimes They Forget – Finding Hope in the Alzheimer’s Journey” http://amzn.to/2l0v59M

Links to Social Media:

Website: http://www.rjthesman.net
Facebook Author Page: http:www.facebook.com/RJThesman?fref=ts
Twitter: https://twitter.com/RJThesman
LinkedIn: https://www.linkedin.com/in/rebeccajthesman
Facebook Group: http://on.fb.me/15XgKN4