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, January 16, 2019

Meet Richard Creighton, blogger of “Living With Alzheimer’s”

Reposted with permission from AlzAuthors.com


By Richard Creighton

Why would a 78-year-old grandfather who doesn’t like to write become a blogger? The answer lies in my personal experience before my wife Kate was diagnosed with Alzheimer’s in 2011.

We played a major role in caring for our parents. There was a lot to learn. I felt we knew far too little about our parents’ experiences before our involvement in their lives. Kate and I were happy to have cared for them, but we wanted to make life easier for our own children. That meant keeping them knowledgeable about our lives. That, in turn, led me to start a journal the day of Kate’s diagnosis. This was a way to document our experiences for future reference.

After a year or two, I began to think that my journal might be of interest to others, especially those who are living with Alzheimer’s themselves. It was too much for a book, and I was continuing to make regular entries. A blog seemed like the way to go.

There are three things about our story that make it a little different from others. First, it is both an account of our post-diagnosis experiences, as well as a “real-time” account of what is happening every day. Second, ours is a story of optimism and joy. No couple escapes the challenges of dementia and the sadness that comes with it, but we have been able to live happily throughout our journey. Third, it is not a place to look for advice. I believe there are many other sources for that. This is simply our story. It tells what it’s been like for us to live with Alzheimer’s.

We’ve maintained an active lifestyle throughout our journey. Most of that has involved our everyday activities here in Knoxville. We attend most of the theatrical productions at three of our local theaters. In addition, we attend a variety of musical events that include opera, jazz, and Broadway. We have traveled a good bit over the course of our marriage. Since Kate’s diagnosis, we’ve enjoyed an African safari and trips to Machu Picchu, the Galapagos, and New Zealand. Our last and final international trip was to Switzerland in 2015, where we both paraglided off the mountain top overlooking Interlaken.

About a year after her diagnosis, we started eating out for all our meals except breakfast. For us, that has proven to be one of the best decisions I’ve made. The meals themselves have been secondary. The important thing is that it has helped to minimize stress and social isolation. It wouldn’t be for everyone, but it works for us.

We’ve been very fortunate. We continue to enjoy life and each other even though Kate’s memory is virtually gone. It is only now that we are reaching the hardest part of our journey. Our experiences may not be representative of others, but I am sure that almost any primary care partner will recognize the issues we have faced. If you get a chance, drop by sometime at http://livingwithalzheimers.com.

About the Author

Richard Creighton is a former college professor and business owner. He and his wife, Kate, met in college and have been married 55 years. They have a daughter and a son and five grandchildren.

Caregiving has been a central part of their lives since the Fall of 1989 when Kate’s father had a stroke. Three of their parents were cared for and died at home, his father in the hospital. Kate’s mother lived in their home for almost 5 ½ years with 24/7 care provided through an agency. Through those experiences Richard learned much about the health issues, living arrangements, and personal care for people with dementia.

Kate was diagnosed with Alzheimer’s two years before his dad died. He says that his experiences with their parents has helped him to be a better primary care partner for Kate. He is guided by his belief that there is no greater privilege than to walk with someone you love through the last chapters of her life.

Blog: http://livingwithalzheimers.com

Twitter: @LivingWthAlz

Wednesday, January 9, 2019

Meet Susan Cushman, author of Tangles and Plaques

Reposted with permission by AlzAuthors.com

“The upside of Alzheimer’s; new mother.” (Smith’s Six-Word Memoirs)
My mother, Effie Johnson, was second generation Alzheimer’s. Her mother, Emma Sue (for whom I was named) died from Alzheimer’s when she was 87 years old in 1986, in the same nursing home in Jackson, Mississippi where my mother would spend the final eight years of her life. I remember watching my mother care for “Mamaw” and wondering what our future might bring. Twenty years later, in 2006, I moved Mother into assisted living. My father had died of cancer in 1998, leaving Mother alone. After eight years of watching her gradual decline and taking on more of her day-to-day responsibilities, especially her finances, I offered first to move her in with us—which she declined—and second to move her to Memphis to an assisted living home. She begged me to let her stay in Jackson, which I did. This meant I would spend the next ten years making the 400-mile round trip to participate in her caregiving, although she did have help, first in assisted living, and finally in a nursing home. I never regretted leaving her in Jackson, where friends from her church would visit her, as well as friends of mine whose parents were in the same nursing home. In Memphis, she wouldn’t have known anyone but my husband and me.
Up to this point Mother’s story doesn’t sound very different than any story of a daughter dealing with an aging parent. But what’s different here is that the tangles and plaques that destroyed Mother’s brain weren’t only in her brain, but also in our relationship. Mother had been verbally and emotionally abusive to me for most of my life. Her abuse was the catalyst for many of my mental health issues, especially eating disorders, depression, and addiction. Thankfully I am healing from most of those disorders today, at age 67. And the silver lining behind Mother’s Alzheimer’s is that at some point the disease took away the part of her memory that was abusive. She forgot how to judge and criticize, and became very loving in the final stages of the disease. I had these words published in Smith’s Six Word Memoirs during that time: “The upside of Alzheimer’s; new mother.”
During the years that I was making those trips to Jackson to visit Mother—first weekly, then every other week, and in the final years, monthly—I was also starting a late-life career as a writer. I was publishing essays in various journals and anthologies, and working on a novel. In 2007 I started a blog. For a number of years the blog followed themes: “Mental Health Monday,” “Writing on Wednesday,” and “Faith on Friday.” I wrote about everything from sexual abuse and eating disorders to spirituality, art, and writing. And yes, about my mother’s Alzheimer’s and our relationship. In fact, I published 60 posts about mother between 2008 and 2016, the year she died. I received a lot of positive feedback on the blog, and one reader suggested that I publish the posts about my mother as a book.
Tangles and Plaques: A Mother and Daughter Face Alzheimer’s is ultimately a love letter to my mother. It’s about forgiveness—which I was able to give before she forgot who I was, thankfully. Of course it contains sad stories about difficult struggles, but it’s also full of humor and grace. Mother died in May of 2016. No more tangles and plaques. For her.
* * *
Susan Cushman is not only an accomplished writer, but she tackles a brutal topic with candor and honesty. Madness awaits us all. I pray I can confront it with equal faith and vulnerability. —Neil White, author of In the Sanctuary of Outcasts
Cushman has written a new kind of love story, one that speaks to the very real concerns of a generation. In this true story of a daughter’s love for her aging mother within the daily trials of caregiving, we read ourselves, our families, and the ways that our losses shape who we become and how we choose to remember. —Jessica Handler, author of Braving the Fire: A Guide to Writing About Grief and Loss
About the Author 
In addition to Tangles and Plaques: A Mother and Daughter Face Alzheimer’s, Susan Cushman is author of a novel, Cherry Bomb(2017), and editor of two anthologies—A Second Blooming: Becoming the Women We Are Meant to Be(2017) and Southern Writers on Writing(2018). Her essays have been published in numerous journals and anthologies. She is a regular workshop leader and conference speaker. Susan has three grown children, four granddaughters, and fifteen Godchildren in the Orthodox Church of which she is a member. A native of Jackson, Mississippi, she has lived in Memphis since 1988.
Susan’s website: http://susancushman.com/

Wednesday, January 2, 2019

Meet Robyn Hollingworth, author of "My Mad Dad"


Reposted with permission by AlzAuthors.com


By Robyn Hollingworth

About ten years ago my life took a turn. I guess you would say it took a turn for the worse, but really, it just changed. I was in my mid-twenties, living in London and working in fashion. My father was diagnosed with Alzheimer’s in his early 60s, and within the year, I had moved back to small-town south Wales to help my mum look after him.

His decline was swift, his actions included (at the start) repetition of stories, misplacing items, and accidentally putting on mums cardigan to go to the shops – so far, standard! He had really mellowed and was fairly stoic and philosophical about the illness, often making jokes about his forgetfulness, even though it must have been terrifying for him. Then life took a turn for the "even worse." Mum was diagnosed with terminal cancer and passed away just three months after I moved home. The effect this had on dad was profound and catastrophic. The seismic shift in the family dynamic tipped him right over the edge. By this point, my older brother was also in residence, but still we couldn’t give dad the level of care he needed. One day he mistook me for a burglar and came at me with a knife. It was at this point that we had to seek more help and dad went into a care home.

His decline was mercifully rapid and I say that with my whole heart. There are only so many times you can re-tell your father that your mother isn’t at work or on holiday, that she is dead. There are only so many times you can watch as someone’s heart breaks apart again. So we lied, we let him believe whatever he wished to be true, and I don’t regret that for a single second.

When he passed away in that April, my brother and I were broken, exhausted, emotionally crippled, but relieved. We are not a religious family, but I took solace from thinking that he and mum were together again, somewhere kinder, somewhere brighter.

I didn’t talk much about my experiences at the time. I had attended a local support group a few times, but really, I just kept it all to myself. There wasn’t the social media presence there is nowadays, where you can log on and speak to a whole host of people around the world, sharing opinions, experiences and support. So I kept my little private journal. It was never intended to be read by anyone, but last year I tentatively thought about putting it "out there." The response I have received to My Mad Dad has been overwhelming. Complete strangers send me messages to tell me about their stories and how common a lot of the things I went through are.

Though I felt alone a lot of the time, I don’t feel so alone any more. What I went through, sadly, isn’t unique and it isn’t unusual. So many people in the world right now are caring for a loved one with Alzheimer’s and it's a tough gig! I got through it with humour, trying to see the little glimmer of light in the darkest of times, like Dad telling people to F$$$ off at the most inappropriate of moments, trying to order Chinese food at 8:30 on a Tuesday morning, or thinking it was Christmas when it wasn’t. And that’s okay, each and every one of us has our own coping mechanisms.

Overall, if I were to impart any advice, it would be to talk. It's good to talk. Let people know how you are; you count too. It’s okay to feel frustrated, angry and hurt, but its okay to smile too. There are always reasons to smile.

About the Author 

Robyn Hollingworth is a reformed fashion buyer/merchandiser who has worked for some of the most famous names in luxury design and retail. During her father’s struggle with dementia, she took a sabbatical from work to care for him, during which time she kept an open and frank diary which was published in April, 2018. The book deals with themes of caring, love, loss and totally inappropriate humor. Though new to the literary world, she has plans to write more. Robyn lives in South West London.




Wednesday, December 26, 2018

Welcome Vanessa K. Williams-Harvey, author of “I Remember”

Reposted with permission from AlzAuthors.com



by Vanessa Williams-Harvey

It took years of silence for me to come to terms and let it all out. Everything came to an abrupt halt in August of 2015. On that painful and dark day, our mother was ultimately placed in a nursing facility. We continue to struggle with that painful decision. My personal guilt, frustrations and regret plagued my soul to the point of endless days and restless nights. I was able to find relief when I pulled out my tablet and began to jot down everything that had been swirling around in my head.

I started writing about the good times; there were a few. The more I wrote, the more I relaxed and I could finally exhale. I used words to breathe life into the dark reality I suppressed for far too long, finding a voice in writing that I wasn’t quite comfortable with verbalizing. I felt incapable of being accountable to myself, let alone anyone else.

“I Remember” is a candid and brutally honest glimpse of what my family and I experienced on our journey with Alzheimer’s. My writing is a deep dive with frank details about some tough and challenging times, as we struggled to communicate and collaborate with one another. It took a lot of time for me to realize that I wasn’t the only one hurting. The very same pain that was ripping at my heart and head was also wreaking havoc on each and every member of our family in a very distinctive way.

As I talked with friends and colleagues about the difficulties we were having as a family, I was amazed by the number of other families being torn apart by a crisis that ultimately led to family conflict. This realization gave me vigor and purpose, while it helped open my eyes to the fact that we are not alone. Although we lacked control over many things that were happening around us, we eventually learned that we did have control on how we would emerge from the ordeal. Our family learned a tough lesson the hard way.

Unfortunately, families in conflict while in the midst of a crisis are a part of everyday life. When emotions run high, anything can happen. It was deeply troubling to watch everyone I loved slip away. It was almost as difficult as watching Alzheimer’s steal our beloved mother.

Our family wasn’t ready, willing or able to function when Alzheimer’s reared its ugly head. “What would mother do?” Mother would hold herself accountable and pay her dues to herself–first. By dues, I mean DUES –Do better, Understand better, Expect better, Serve best! It’s what I decided to do and our family is in a much better place today.

I Remember was released in June 2017 and is about a family in conflict, while in the midst of a crisis. Our family’s crisis was and is Alzheimer’s. Just when we thought all hope was lost, we mustered up the energy to fight for our mother, fight for our integrity and fight for our family. Only then were we able to transition from victims to victory.

About the Author

Vanessa K. Williams-Harvey is a life-long advocate for setting high standards and helping others to achieve their life purpose through self-awareness and proper planning. She is a registered nurse by profession and currently serves as a Clinical Informatics Manager. She is also an adjunct faculty with a local college. In these roles, she has the ability to connect with many diverse people and empowers them to thrive in an ever-changing world.

The book, I Remember is about her family’s journey when its matriarch is stricken with Alzheimer’s disease and how this crisis almost destroyed everything their mother had spent a lifetime building. Only with time, acceptance, forgiveness and faith were they able to move from victims to victory. Every family faced with a crisis is challenged and tested in ways that exposes vulnerabilities.

Vanessa is an advocate for Alzheimer’s awareness and serves as a co-chair for the Louisville area Walk to End Alzheimer’s. She is married to her husband, Mark Harvey, and they are the proud parents of four grown sons and a dog, Maxx. They both are active members of Burnett Avenue Baptist Church in Louisville, Kentucky.

The time is now to strive for personal acceptance and satisfaction by paying DUES — Do better. Understand better. Expect better. Serve best!




Email address irememberdus@att.net

Wednesday, December 19, 2018

Meet Tracey S. Lawrence, author of "Dementia Sucks, A Caregiver's Journey With Lessons Learned"

Reposted with permission from AlzAuthors.com

By Tracey S. Lawrence

Once upon a time, I was a self-employed graphic arts professional. I designed stuff. I helped clients with their marketing and printing problems. My parents were living it up in southern Florida, and I believed in the Myth of Retirement:
Stop working
Spend money like you’re drunk
Spoil your kids and grandkids
Do all the stuff you always dreamed of
Eventually, gently, die in your bed at home
Cherubs lead you to heaven’s gate
Cue heavenly choir

In 2003, I learned about the harsh Reality of Post-Retirement. I went to visit my parents in Florida and realized Dad had been covering up his illnesses. He had a lot of issues. He was 75. My mother, who was 74, was very dependent on him.

After a test gone wrong, my father’s short term memory evaporated, and following many misdiagnoses, I realized he had vascular dementia. He knew it, too, and did not want to live that way. My brother and I supported his wish to avoid prolonging his life. My father died in July 2004 at the age of 76.

Mom lived independently in Florida, with regular interventions from my husband and me. By 2009, it was becoming clear that Mom couldn’t live on her own any longer. She came to live with us in northern NJ.

I loved my mother, but we had a contentious relationship. She was still the person who drove me nuts when I was a teenager, but now I couldn’t hide from her in my room. She could burn my house down.

In October 2010, I took Mom back to Florida for one last visit to her apartment. It was difficult being in that dusty museum, still brimming with reminders that Dad was no longer there. On that trip, I took refuge in writing. And I decided to blog, so others might learn from my experiences.

By the time my mother died in April 2015, I had 600 followers. And I stopped needing to write.
A year later, I revisited my writings and found myself enjoying them as a reader. I realized the book I had been asked by so many to write was already written. It just needed some polish.

And I had time to polish it, because my husband, Bob, got sick New Year’s 2017 and I wound up caregiving HIM for 5 months. When I couldn’t sleep, I worked on the manuscript.

Bob recovered, and I committed to getting my book published. With encouragement from my media-savvy millenial niece, I finished the first draft. I researched, found someone to help me, and got a publishing deal in July 2017.

The response to my book has been amazing. People tell me they can’t stop reading it, and it makes them laugh and cry.

And that was my intention. I wanted to invite people to read something engaging and amusing, so they would learn without effort. I’ve been thanked. I’m hopeful that my message will resonate with many others and save some lives. And that gives me the greatest feeling: that I am making an impact that will encourage more mindful, healthful caregiving, and that people will be more willing to have uncomfortable conversations sooner.


About the Author 

Tracey S. Lawrence is an author, educator, innovator, disruptor, and entrepreneur. Her journey as a serial caregiver led her to create Grand Family Planning, LLC, a comprehensive multigenerational family coaching and support system. Tracey shows clients the power of being proactive in light of the certainty that illness and death will be a part of every person’s life. She saves lives and legacies in a climate which is focused on lengthening human lives without regard to quality of life. Her team-based approach simplifies a daunting and complex process. Tracey’s book, “Dementia Sucks,” was officially released by Post Hill Press on May 15th, 2018 and is available from Amazon, Barnes and Noble, and fine booksellers everywhere.

Connect with Tracey S. Lawrence


Instagram: @DementiaSucks






Wednesday, December 12, 2018

Meet Jessica Bryan, author of “The Memory Keeper”

Reposted with permission from AlzAuthors.com

by Jessica Bryan

I am a writer. That’s difficult to say when I’m so busy being a caregiver for my mother who is 99 years old and has had Alzheimer’s for 15 years. Mom lives with us. She is in advanced stages now, but was exhibiting signs of Alzheimer’s even while my husband and I cared for my father, who also had Alzheimer’s. No one…NO ONE is prepared for this! There’s no caregiver’s manual that tells us how to do this job.

I decided that as a writer it might help others to write about caregiving in the non-clinical, in the trenches, personal experience, kind of way. I have found ways to help myself out of my depression, anger, denial, impatience, sadness, and frustration. I’ve discovered so many things to help me through the most difficult job I have ever experienced. How could I do anything BUT write about this to help others?
 
My latest book, The Memory Keeper, is the fourth in a series of our journey and experience dealing with this devastating disease. It was a cathartic process to share my words, my thoughts, my emotions. They are sometimes raw, sometimes irreverent, often loving. I am resolved and accepting of what is to be, in a philosophical kind of way; but I also see the humor in some of the events that lead us there. Because of my writing style and the way I deal with the often taboo subjects (that one simply doesn’t discuss in polite society!) many others have written to me thanking me for my candid discussion of these difficult issues. One reader who attended a book signing proclaimed that my books were like her own personal therapy sessions. Many have thanked me for giving them permission to laugh through their tears.

In The Memory Keeper, I take it upon myself to record and retain the legacy that my mother leaves as I grapple with my own emotions and difficulties of caring for her. Her memories are lost…imprisoned in the disease-ridden brain that doesn’t allow for thoughts, speech or even physical control. I alone must pass down the family stories. I alone must chronicle the life of the wonderful, beautiful, elegant, vibrant woman who used to reside in the body that sits quietly now in our family room staring at the television without understanding. The weighty responsibility of caregiving reminds me that while we are still able we must make the most of each moment. We must embrace the opportunities when we can to share stories, to ask questions, to spend time with each other, and to cherish life while we can. I am resolved…yes. It is too late for tears. It is time to smile about my mother’s life well-lived.


About the Author

Jessica Bryan lives in North Carolina where she is a real estate broker and an active advocate for caregivers and care receivers. Jessica has written all her life, but during the past few years she began writing full-length books, including fiction and non-fiction, books for young adults, and some wonderful Juvenile action-adventure books. Her interest in writing about caregiving began when her mother came to live with her and her wonderful husband, Skip. Jessica loves to laugh and claims that her sense of humor shines though all of her books regardless of the subject matter.


Connect with Jessica Bryan





Wednesday, December 5, 2018

Meet Robin Gail, author of “Dementia or Alzheimer’s?”

Reposted with permission from AlzAuthors.com

By Robin Gail

When my husband and I began the long journey taking care of my mother, we had no idea what to expect. We had no experience, knowledge, or help from anyone. When we first suspected Mom was ill, I began research how to help her travel through the relentless disease of Alzheimer’s. I found quite a number of books, but they were most often written from a medical point of view.

After my beloved mother died in ’09, I felt a strong urge and need to help others going through what we had gone through with caregiving. I wanted to write a book from a personal point of view, a book full of tips and ideas from someone who had actually traveled this road with their ill loved one. I felt very motivated to try to ease the burden that I know from firsthand experience others feel when being a caregiver.

I wanted to write the book shortly after Mom’s death, but it was too difficult to relive everything so soon after experiencing our caregiving journey. So, as I recalled things we did, I would jot them down on Post-it notes and put the notes away for a later time when I knew I would be ready to write.

In my book, Dementia or Alzheimer’s? I outline many methods and techniques we used to attempt to give Mom’s life (and ours) some semblance of normalcy. Much of it was trial and error, but for the most part, things were much easier for Mom, as well as us.

I have received many thanks for writing this type of book. People have told me numerous times there really is not a good book from a hands-on caregiver that is so personal and chock-full of helpful information and resources. The feedback from others is phenomenal. The reviews on Amazon are excellent. My book ranks quite high on Amazon, reaching an Amazon Best Seller status in the first week of publication.

There are so many desperate caregivers today with nowhere to turn, many with no one to provide assistance and respite for them. My heart is heavy every time I hear of someone going through this dreadful disease with their loved one. It is my hope and prayer that my book will help to make the journey a bit more tolerable, a bit less stressful and maybe less lonely.

About the Author

Robin Gail grew up in Texas and continues to live there with her husband and beautiful Cocker Spaniel. Robin is certified by the Supreme Court of Texas as a Certified Shorthand Reporter, aka, court reporter, and has owned her own court reporting business for thirty years.

With over thirty years’ experience working in the legal profession, she is now focused on writing and learning to blog. Robin perseveres to accomplish her goals and realizes the importance of honesty and integrity in reaching those goals.

She is delighted to have her first book, Dementia or Alzheimer’s? published. Robin has always been extremely dedicated to the task at hand and works hard to help others in need.

In her spare time, she enjoys gardening, playing the piano, cooking, photography, reading both fiction and non-fiction, and writing.



robin@robin-gail.com

Facebook – Robin Clark Samrow