From the AlzAuthors Blog: Meet Gincy Heins, Editor of “Before the Diagnosis – Stories of Life and Love Before Dementia”

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By Gincy Heins

As I was texting a friend who would be meeting my family for the first time, I realized she would never know so many aspects of my husband, and I started to cry.

She would never know the person who talked easily and could captivate people with his stories about working at Disneyland. She would never know this man who could repair anything that needed fixing in our house and was called by other people to answer their home repair questions. Instead, she would see my husband as a rather quiet person who didn’t have a lot of confidence in his abilities and often couldn’t make a decision about the simplest things.

Wiping my tears, I thought of the many incredible people I now know who had Alzheimer’s or another type of dementia. I got a glimpse of who they were through stories their spouses told, and I wanted other people to see how amazing all these people were. Whether they were amazing because they were highly respected in their career or they lovingly raised their family, I felt their stories should be told.

I emailed everyone I knew whose loved one had any type of dementia and told them I had an idea for a book sharing stories about who our loved ones were before they had a dementia diagnosis. I reached out through social media and I asked Alzheimer’s Orange County to help me spread the word. When being filmed for a MyAlzhemer’s video I invited the producer to share a story. I reached out to as many people as I could.

I had no idea if anyone would respond positively, or at all. I hoped for ten stories and was thrilled when I received 36 contributions! This was so much more than I dreamed of receiving!

gincy coverI enlisted two friends to help with the editing. Together we read through each contribution many times and edited for clarity, all the while trying to keep each person’s story in their voice. All authors approved the final version of their story.

Finding the perfect publishing option was a challenge, but I knew we would find the best way to publish this important work. Most publishers never responded. One was very interested in the concept, but didn’t want to deal with a book involving 36 authors. Self-publishing had too many considerations. A friend came to the rescue and handled that for me. Whew!

On March 12, 2018, Before the Diagnosis: Stories of Life and Love Before Dementia was published on lulu.com (and is now available there as well as from Amazon and Barnes & Noble). This anthology of 36 stories has been well-received and shows that people are not forgotten or unimportant because of their diagnosis.

As of the end of December, over 230 copies of the book in print and digital formats have been sold. Each of the 36 authors who participated in this book were given the option of donating their share of the earnings or retaining them. I am thrilled that over 90% of the revenue is being donated to one of four nonprofit organizations: Alzheimer’s Orange County, Alzheimer’s Association, Lewy Body Dementia Association and Alzheimer’s Research and Prevention Foundation.

Purchasing this book gives back to organizations that help us on this journey, benefitting all of us.

About the Author

Gincy Heins

Gincy Heins is the creator and editor of Before the Diagnosis: Stories of Life and Love Before Dementia and one of the co-authors of the 365 Caregiving Tips: Practical Tips from Everyday Caregivers series of books.

She teaches classes for older adults, is a Senior Commissioner for Cypress, CA, speaks at conferences and on panel discussions, and volunteers at the public library and with Alzheimer’s Orange County. She and her husband are the proud parents of one grown son.

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From the AlzAuthors Blog: Meet Richard Creighton, Blogging at “Living with Alzheimer’s”

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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: Living with Alzheimer’s Blog.

photo 2 richard creighton jpgAbout 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.

Connect with Richard Creighton

Living with Alzheimer’s Blog

Twitter: @LivingWthAlz

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From the AlzAuthors Blog: Meet Susan Cushman and Her Memoir “Tangles & Plaques”

cushman, susan

By Susan Cushman

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. Continue reading

From the AlzAuthors Blog: Robyn Hollingworth and “My Mad Dad: The Diary of an Unraveling Mind”

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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 Mum’s 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. Continue reading

From the AlzAuthors Blog: Meet Vanessa Williams-Harvey, and “I Remember”

Harvey, Vanessa

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 Mockup“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. Continue reading

From the AlzAuthors Blog: Meet Tracey Lawrence and “Dementia Sucks – A Caregiver’s Journey with Lessons Learned”

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By Tracey S. Lawrence

Dementia SucksOnce 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. Continue reading

From the AlzAuthors Blog: Meet Jessica Bryan, Author of “The Memory Keeper”

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By Jessica Bryan

Memory KeeperI 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. Continue reading

From the AlzAuthors Blog: Meet Robin Gail, Author of “Dementia Or Alzheimer’s?”

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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. Continue reading