Alzheimer’s/Dementia

Lively Blog, Now a Book, The Dementia Chronicles

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The Dementia Chronicles, Susan WingateABOUT AMIE, by Susan Wingate

I started blogging about my Mom, Amie, after she moved in with us―after the Alzheimer’s, the congestive obstructive pulmonary disease (COPD), and the schizophrenia nearly killed her living alone. I wrote close to twenty-five posts, after which, I compiled them into my book, The Dementia Chronicles. I hoped our story would help others who found themselves as a caregiver for someone they loved.

During a visit from Phoenix with my sister and grandmother, Mom fell down the last step of our stairs and broke her hip. Within two years of that visit, Mom had moved from Phoenix to Friday Harbor, Washington to live in a separate home on our island property.

Back in May 2003, on our wedding day, Bob had to assist my Mom to walk a mere five-hundred feet from her house to our backyard where we held the ceremony. A month later, Mom was in the ER experiencing her first respiratory attack after having smoked for fifty years.

For a spell, Mom kept at bay what doctors later diagnosed as COPD. In 2010, during another visit to the ER, x-rays showed scarring within and around her bronchial tubes, invading her lungs. Mom declined steadily after that with cognition red flags frequently appearing.

By 2013, she complained of electricians stealing her checks, hackers breaking into her old college records and stealing her social security number―two of the many stand-out issues she insisted were true. By September 2014, she could no longer drive so we disabled the car engine and lied to her, telling her the car was broken and that I would drive her anywhere she wanted to go.

Mom was furious. Her anger became exacerbated, exhibited by bouts of paranoia and more detailed hallucinations. As she grew physically weaker, we knew we had to move her into our home. So, in November 2014 we set out to revamp our garage into a studio apartment. It turned out beautifully―complete with an enormous stone fireplace to keep her warm. It was so wonderful, my husband, Bob, threatened to move down there himself.

Mom fought against the move, but the only other choice was putting her into a memory care facility. With few choices on the island where we live, she would have gone to a facility on the mainland―a four-hour ferry ride or costly thirty-minute flight away – not viable options.

After transitioning her to the studio apartment, Mom tried to escape. I found her huddled by our front door gasping for air, holding her cane and, sitting dutifully next to her dog, Teddy, his own leash in-hand.

But, the hallucinations grew stronger.

Within a month of the move, the big hallucination occurred. She believed someone had snuck into her apartment, shimmied across the floor on his back over to her fireplace and had stuffed crumpled newspaper into the chimney flue causing smoke to billow. It was a cold October but she opened all her windows to air out the room anyway. There was no smoke. There was no man stuffing newspaper. What there were, were sounds―tinny “plunks” whenever the gas fireplace kicked on and off.

After a month of fighting the hallucinations and failing, I started Mom on anti-psychotics and anti-anxiety meds. Within a few days, the visions calmed.

When she normalized, I learned many things, like, how much Mom loved grilled cheese sandwiches and chocolate shakes. The in-home nurses told me I had earned an unofficial OTJ nursing degree.

One month later, after I finally figured out how to manage our lives with Mom’s, she died. I didn’t go out or to church for four months.

I still have moments when I hear Mom call for me―that’s how PTSD is. I remember screaming, anger flaring about anything and everything for six months after she died―fortunately, it was short-lived. But this is the thing, if I had a choice to do it again, I’d do it all over, the same way, but with more chocolate shakes and grilled cheese sandwiches for Mom.

 

AUTHOR BIOSusan Wingate

Susan Wingate is a #1 Amazon bestselling author of over fifteen novels, many of which are award-winners. She writes across both fiction and nonfiction genres and typically sets her stories in the Pacific Northwest where she is the president of a local authors association. She writes full-time and lives in Washington State with her husband, Bob.

Follow Susan Wingate on Social Media:

SusanWingate.com

Amazon Author Page

Facebook

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Dialogue Podcast

 

Discounted Books About Alzheimer’s Disease

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June is Alzheimer’s and Brain Awareness Month, a time to increase understanding of what dementia is and how it impacts the lives of those it touches. It’s also a great time to work to decrease the stigma and silence that too often accompanies an Alzheimer’s diagnosis.

Each June AlzAuthors hosts a book sale and giveaway to help caregivers and those concerned about dementia find knowledge, guidance, and support offered through shared wisdom and experience. AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience. I’m proud to be a part of this growing non-profit organization, and I’m excited my eBook, Requiem for the Status Quo, is a part of this sale for only 99 cents, but only for a week!

June 15th through June 22nd you can take advantage of this biannual opportunity to purchase excellent resources on the dementia diseases for free or at reduced prices. AlzAuthors offers a variety of genres, including fiction, memoir, non-fiction, and children’s and teen literature. Most are available in Kindle and ebook, and many are available in paperback and audio. I would like to encourage you to build a library of carefully vetted books to help guide and inspire you every day.

These books are written from a deep place of solidarity, vulnerability, and love. May you find one – or two, or more! – to help guide you on your own dementia journey. Click here for the sale’s discounted offerings.

Making Tough Decisions About End-of-Life Care in Dementia, Dr. Anne Kenny

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Making Tough Decisions About End-of-Life Care in Dementiaby Dr. Anne Kenny

Nearly 500,000 individuals are diagnosed with dementia every year. Year after year. As stunning as that figure is, it does not take into account the family members and caregivers who are subsequently affected by each diagnosis. When they are included, the numbers rise to an even more incredible level.

What this means in our society is a rapidly ballooning population of people faced with painful scenarios and the need to make vital end-of-life decisions for those who no longer can—a role for which most are largely unprepared. Sadness, confusion, guilt, anger, and physical and mental exhaustion become the norm for these families as the disease enters its final stage. The toughest decisions I ever made were about the life and death of my mother, who had lost her voice in decisions to dementia. But, I was one of the lucky ones: My 30 years as a doctor specializing in the care of older people and end-of-life care had prepared me to face these decisions. Yet, even with that advantage, I struggled. And my siblings struggled. The challenges that dementia and end-of-life decisions present can be – and usually are – overwhelming. When I looked for a resource to help my siblings, I found none. My personal experience compelled me to fuse my clinical knowledge, with everything I learned helping to care for my mother, into a book to help others. My family’s experiences guided me in what the book should include. As I reflected, I also realized the growth, hope, lessons, and transformation that occurred during living with a beautiful woman with dementia. While the sometimes-overwhelming nature of caregiving sent me to the bookstore looking for a guide, when writing the guide, I wanted to acknowledge the experience, strength, hope, and love that also accompanied the journey.Dr. Anne Kenny

This book is laid out as a guidebook. Each chapter includes stories of families I’ve met and worked with during the last 30 years. These stories are meant to illustrate a common issue, concern or situation that occurs in late-stage dementia, and I hope that by seeing how others have met these challenges, others will see a way forward. This guidebook deals with the emotional aspects of being a surrogate decision-maker, communication with others at a challenging time of life, and the all-encompassing grief experienced in the process.  Additionally, it provides information on dementia, its progression and the potential change in goals of care that occur as the disease moves from a chronic to a terminal stage. Finally, the book provides a view of the joy and fulfillment that can accompany assisting in the dignified death of someone you care for.

Author Bio

Anne Kenny, MD, author of Making Tough Decisions about End-of-Life Care in Dementia, published in 2018 by Johns Hopkins University Press, is a Professor of Medicine with specialty training and board certification in Geriatric Medicine, and Palliative and Hospice Care. She has been a practicing physician for over 30 years and has been recognized by her peers as a “Top Doc” in Geriatric Medicine. She has been honored with a Brookdale National Fellow and the prestigious Paul Beeson Physician Faculty Scholar awards. Dr. Kenny has worked clinically as a geriatrician in nursing homes, assisted living, rehabilitation, and clinical outpatient settings. Dr. Kenny has found joy in her work with individuals and their families managing issues related to the diagnosis of dementia. Her experience in partnering in the care of these families touched close to home when her own mother was diagnosed with dementia. Dr. Kenny joined with her mother and her brothers and sister to provide the best care for her mother during the early and middle years following her mother’s diagnosis. Her expertise, coupled with her mother’s playful spirit and her sibling’s openness, support, intelligence, and compassion, allowed for the highest functioning and independence of her mother for several years. Dr. Kenny’s expertise and experience in inpatient and outpatient Palliative and Hospice care were called on when her mother reached the final stages of living with dementia. The Kenny family worked together for their mother’s graceful exit from this planet.

In addition to her clinical practice, Dr. Kenny lectures to both healthcare professionals and the public on aging-related issues including navigating dementia, exercise, nutrition, hormone therapy, death and dying, and frailty. She is an educator of medicine and research skills. She has over 100 scientific publications and presentations focused on improving the care and functioning of older adults.

Connect with Dr. Kenny:

https://www.facebook.com/anne.kenny.5682944

https://www.linkedin.com/in/anne-kenny-b1809b19a/

https://twitter.com/AnneKennyMD

Life is Precious – Let me Tell You Why

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This post is about anticipatory vs sudden death. I know that doesn’t sound like a very positive post in honor of my sixty-seventh birthday, but this subject matter weighed on my heart the other day so I decided to write about it.

The last time I saw my mother was the 3rd week of August 1994. She died one month later. Mom and Dad visited their adult children during the month of August: my brother and I in the Seattle, WA area, and my sister in Northern California. What a gift that was – the impact of that gift not fully appreciated until Mom was taken from us during her sleep on September 24, 1994 – a life-changing shock to my father who found her, an occasion for us kids to receive the worst news possible by telephone.

The last time I saw my father was October 13, 2007 at his bedside as cancer and Alzheimer’s disease leeched the life from him. When my father was diagnosed with Alzheimer’s four years earlier, we knew there was no cure; we had time to prepare for the inevitable, an inevitability accelerated by a cancer that was not operable due to my father’s frail condition resultant from the slow deterioration of his body by Alzheimer’s disease.

Which death was more difficult, the fully unexpected one, or the expected one?

There is no comparison, and by that I mean you cannot compare grief in that manner. Grief is grief and although the shock of my mother’s death was a jolt to our emotional systems, so too was the slow death that occurred for my father. The outcome was the same: someone we all loved no longer existed, but more importantly, we became painfully aware that whether a person is seventy-seven years old when they die, as was our mother, or eighty-nine years old as was my father, life is short.

The child who succumbs to an illness, the teenager killed in an automobile accident, the newly married sweethearts starting out on their journey as a couple, the sixty-something-year-old or centenarian whose days come to an end, all those lives are valuable and their ending won’t always be anticipated.

It may be trite to say live each day as though it were your last, but trite or not, that’s what each of us needs to do. I do so without being morbid about it – rather, I have gotten into the habit of living and loving fully, always respecting and honoring those with whom I come in contact, and spreading kindness and truth wherever I go. Because, as I’ve said: life is precious.

Won’t you join me?

Granny Can’t Remember Me, by Susan McCormick

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Granny Can't Remember MeGRANNY CAN’T REMEMBER ME:  A CHILDREN’S BOOK ABOUT ALZHEIMER’S

by Susan McCormick

Granny Can’t Remember Me, my lighthearted picture book about Alzheimer’s disease and dementia, was motivated by our family’s experience with my mother’s Alzheimer’s. My sons witnessed her agitation when she knew her memory was failing, yet we learned how to shape our conversations so they were pleasurable for all. My boys always started a visit with my mom with, “Hi, Granny, it’s me, James, or it’s me, Peter.” This set my mother up to know she was the grandmother and this was her grandchild. If not for those clear introductions, my sons would be greeted with, “Which one are you?” I wrote this book for children like mine, who need coping skills for this sometimes scary and sad all-too-common family situation.

We learned not to ask any questions, because this would make my mother anxious and worried. Before her Alzheimer’s progressed, my lawyerly mom would try to figure out why she didn’t know the answer, and she would often try to fake an answer or turn the conversation away from the question. This upset her. So, my boys would just state the facts and start a conversation. “Today is Friday and it’s root beer floats and milkshakes day. I love root beer floats and milkshakes.” Then my mom could join in with, “I love chocolate milkshakes best of all.” In the book, six-year-old Joey doesn’t ask his Granny what she ate for lunch because he knows she can’t remember.

Another trick was to have a story my boys knew my mother enjoyed, usually about Albert, our huge, slobbery Newfoundland dog. The boys could say, “Albert got stuck in the pantry and ate an entire bag of flour.” Then my mom would say, “Oh, Albert, what a dog! What a mess!” They could tell the same story over and over; my mom always loved it and couldn’t remember that she’d heard it before, which always presented an interesting conversation topic. Alternatively, they encouraged my mom to tell her favorite stories. In Granny Can’t Remember Me, Joey hears Granny’s stories again and again, how Mom cut Uncle Jim’s hair playing barbershop or when Jim got a bump on his head playing catch with rocks.

We never questioned anything my mom said. When I told her James wanted to learn to drive a manual transmission but couldn’t find a car with a stick shift, my mom brightened and said, “My car is a stick shift, he’s welcome to borrow it.” Instead of telling my mom she hadn’t driven in years and that her car was long gone, I said, “Thank you, I’ll let him know.” She beamed, knowing she was helping. In Granny Can’t Remember Me, Joey knows his grandmother’s dog was alive long before he was born, but he doesn’t tell this to Granny, he just goes along with her story.

These methods, not asking questions, going with the flow of the mind of the person with dementia, and telling favorite stories, served my boys and our family well. In the book, though Granny can’t remember Joey likes soccer and rockets and dogs, with the endearing stories of her Three Best Days, Joey knows she loves him just the same. Granny Can’t Remember Me shows a boy’s acceptance and love for his grandmother despite her unfortunate illness. I hope the story helps other families dealing with dementia as well.

Author Bio

Susan McCormick is an author and doctor who lives in Seattle. She also wrote The Fog Ladies, a cozy murder mystery with spunky senior sleuths set in an elegant apartment building in San Francisco. She graduated from Smith College and George Washington University Medical School, with additional medical training in San Francisco and Washington, DC. She served as a doctor for nine years in the US Army before moving to the Pacific Northwest. She is married and has two boys. Her mother and father-in-law had Alzheimer’s disease.

Social media links

Author Website: https://susanmccormickbooks.com

Goodreads: https://www.goodreads.com/book/show/47112539-the-fog-ladies?from_search=true

Bookbub: https://www.bookbub.com/books/the-fog-ladies-a-san-francisco-cozy-murder-mystery-by-susan-mccormick

Facebook: https://www.facebook.com/susanmccormickauthor/

Twitter: https://twitter.com/smccormickbooks

Instagram: https://www.instagram.com/susanmccormickbooks/

 

 

 

Life’s Chapters

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I am not a writer, I happen to be a woman, mother, spouse, sister, grandmother, aunt, and a friend who has tried her hand at writing. I wrote a novel, Requiem for the Status Quo, to honor the father for whom I provided care when he had Alzheimer’s disease – a disease that took his life on October 13, 2007. I didn’t set out to be a novelist – arguably, I’m really not a novelist at all – but I knew it was imperative that I do something important for future Alzheimer’s caregivers and to use whichever vehicle was needed to accomplish that something. For me, it was writing a book.

Then what? What else could I possibly do to magnify the impact I set out to make regarding the disease that takes everyone it settles on, and forever changes the family members associated with its victims?

What I did was join AlzAuthors, a digital and community platform that uses the art of storytelling to light the way for those impacted by Alzheimer’s disease, to advance understanding of the disease, and to lift the silence and stigma of Alzheimer’s and other dementias. As a newly published author and a survivor of dementia caregiving, I was extraordinarily impressed – and still am – with the organization founded by three daughters of Alzheimer’s who sought a place of refuge and resources for their own caregiving journeys.

Then a funny thing happened – one of those founders asked me to join the management team of five, an invitation I gladly accepted, and with the guidance of a business consultant, who just happens to be my own daughter, AlzAuthors went from being a growing community of authors to a 501(c)(3) non-profit organization.

Then something else happened: although not serious, my health took a debilitating turn that now requires me to step back from my AlzAuthors responsibilities. Only the patient knows what she can handle, and what I know is that my focus needs to be on my health, as well as on the precious family that means so very much to me. I am still an AlzAuthor and I very much support AlzAuthors’ non-profit mission, but I will do so from a slightly removed distance.

Of this I am certain, and I quote Pico Iyer when I state:

In an age of acceleration, nothing can be more exhilarating than going slow.

In an age of distraction, nothing is so luxurious as paying attention.

In an age of constant movement, nothing is so urgent as sitting still.

I completed another novel with a message I feel is of great importance that I will publish later this year. Currently, however, I have more important matters on which to spend my time and energy.

Now is my time for sitting still – focusing on me, and focusing on my family. That is the latest chapter I am writing for my life, hoping to get it right, once and for all.

This Week’s Good News!

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Leave it to Reno, Nevada to figure out how to use dance to benefit those with cognitive impairment. This story spotlights a wonderful dance club that is making a grand impact on the lives of those with dementia and their loved ones.

Dynamic Trilogy by Actor/Director Lynne Gentry: Women of Fossil Ridge

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Flying Fossils, Lynne Gentryby Lynne Gentry

Fourteen years ago, my mother was diagnosed with an aggressive form of breast cancer. She was a brilliant woman who’d spent the majority of her career in the legal field as a very sought-after court reporter. But as her disease progressed to her brain, her physical and mental health slowly declined. The woman I knew, the one who could add columns of numbers in her head and spell medical terms longer than her arm, slowly lost the ability to balance her checkbook and manage her meds.

It soon became evident that someone would have to step in and help my father manage her care.

Unlike a lot of caregivers, I was fortunate. I have two sisters and a brother. All of us agreed to give one week a month to come “take care of Mom.” But I lived 8 hours away and had to make the long drive alone. Added to the strain of doing my part for Mom, I had a husband, a drama business, and two teenagers still living at home.

For two years, I juggled Mom’s care and my family. It was the most wonderful thing I’ve had the privilege of doing. It was also the most stressful, exhausting, and one of the saddest times in my life. When Mom’s thoughts were clear, we’d reminisce about old times, or I’d ask questions about her childhood. I did my best to collect her knowledge of our family tree. But as cancer progressed in her brain, the good days became fewer and her thinking became more like that of someone suffering from Alzheimer’s disease.Finally Free, Lynne Gentry

Mom had little notebooks everywhere with jottings that made no sense and her actions became dangerous. One day she drove her motorized wheelchair to the curb, slid into her old Lincoln, left her scooter on the side of the road, and drove herself to Walmart. When she got to the store, she realized that without help, she couldn’t get to the motorized cart she needed to navigate Walmart. She sat in the Walmart parking lot for thirty minutes, had a good cry, then turned around and drove home. Fortunately, she didn’t wreck the car, she found her way home, and her scooter was right where she left it.

To keep from crying about Mom’s deterioration, I learned to laugh. Humor became my key to surviving the horrible process of watching pieces chip off of this person I’d always thought was invincible. Watching Mom deal with her impending death taught me a lot about how I wanted to die. There were things I wanted to do and so many things I wanted to say while I still could. Most importantly, I gained a deeper appreciation for each day and the importance of faith, friends, and family.First Frost, Lynne Gentry

But I wasn’t sure what to do with the stress I felt for how much time taking care of Mom was taking away from caring for my family. We’d just moved to a new city. My teenage children were adjusting to a new home, new school, and trying to make new friends. The burden of taxiing them to all of their activities fell to my husband. Every time I missed one of their activities, I was swamped with guilt. When I was with Mom, I felt like I was failing my kids. And when I was with my family, I worried that Mom’s care would fall through the cracks.

While this fictional story does not depict the exact journey I had with my mother, many of the feelings portrayed in the three-book series come from the ups and downs I experienced during the caregiving process. When I did the research into the different types of dementia, I realized the dilemmas that arose during my intense period of caregiving were not unique to me. Millions of you are currently sacrificing your time, money, and efforts to care for an aging parent. Your struggle is real.

My prayer is that this three-book series will give you permission to laugh, rest, and to ask for help when you feel pulled in a thousand different directions. That you will experience love on the deepest level when you give love to another—whether or not they give love to you. That by your loving actions you will teach your children what it means to love, even when it’s difficult. That you’ll find something to laugh about every day. And that, in the end, you’ll forgive yourself for feeling like you failed everyone who had you sandwiched between two impossible choices.

Lynne Gentry

Lynne Gentry Author Bio

Lynne Gentry is an actor/director turned award-nominated fiction author who loves using her crazy imagination to entertain audiences with her books. Her varied works range from the highly-praised time travel series (Carthage Chronicles) to two laugh-out-loud romantic comedy series (Mt. Hope Southern Adventures and the Women of Fossil Ridge). She recently released a co-written medical thriller (Ghost Heart) with author friend Lisa Harris. RT Reviews calls Lynne Gentry a Top Pick author and one to watch. Readers say her writing is extraordinary and her stories exceptional. When Lynne is not creating enchanting new worlds, she’s laughing with her family or working the cancer wards with her medical therapy dog. Find out more about Lynne and her books at www.lynnegentry.com.

Website:  https://www.lynnegentry.com/

Facebook:  https://www.facebook.com/Author-Lynne-Gentry-215337565176144/

Twitter:   https://twitter.com/Lynne_Gentry

Pinterest:   https://www.pinterest.com/lynnegentry7/?etslf=4411&eq=lynne

Instagram:   https://www.instagram.com/lynnegentry.author/?hl=en

Amazon links to each book in the trilogy: Flying Fossils, Finally FreeFirst Frost

The limited value of worrying.

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Your parent is diagnosed with Alzheimer’s disease or other dementia and as their biological child you wonder, “Will that be my fate?”

An article of mine, Me Worry? Not on your Life was recently published on the CogniHealth website, a company that in partnership with Alzheimer Scotland, developed a caregiver aid for those – especially family members – providing care for a loved one with Alzheimer’s disease or other dementia.

I chose the topic of whether or not dementia might be passed along to biological family members because as a daughter who witnessed the decline of her father as a result of dementia, I certainly had an opinion on the matter. Does one need to worry their entire life about the chance of acquiring Alzheimer’s disease?

I hope you will read my article that while transparent and painfully clear, also provides many rays of hope and encouragement for those in similar circumstances.

At the very least, I am certain you will come away with a clearer understanding of how little value worry contributes to ones’ life.

Meet Sue Anne W. Kirkham, author of Loving Zelda – A Stepdaughter’s Caregiving Journal

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by Sue Anne W. Kirkham

How it all began:

It was late October when my husband, Jack, and I showed up at my father and stepmother’s townhouse to walk their two dogs—a duty we’d taken on several months earlier, after they announced they no longer felt up to the task. At 84, my father suffered from respiratory and circulatory problems; at 81, my stepmother showed early signs of dementia, with some Parkinson’s-like tremors erupting, just to keep things interesting. I was determined that they not be forced by these circumstances to give up their pets. On this day, Dad greeted us at the door with another shocker. “We have to move into assisted living.” No hello. No how ya doin? Just this stark declaration.

Dad and Zelda had always been younger than their years in every respect. He continued his career as a psychologist into his late 70s, and the warm, witty, delightful woman he married in 1972 had always been active and ready for a new adventure. Each enjoyed absorbing hobbies, and they eagerly traveled the globe together for most of their 32-year marriage.

As Jack and I herded the pups that chilly autumn day, I remained troubled by the prospect of a radical change in lifestyle for my beloved father and stepmother. So I hatched a plan: leave my dreary clerical position and devote myself to lightening their load and injecting some sparkle back into their lives. I would carve out a new weekday vocation as companion/housekeeper/social director/exercise coach/assistant cook.

I kept a journal from Day One as, over the next 18 months, Zelda suffered incremental losses of mental acuity. Less noticeably, my father’s COPD was cranking toward a dramatic climax that none of us anticipated. While I focused on finding enough fingers to plug the ever-multiplying holes in the home-front dike, Dad’s staunch self-sufficiency propelled him through his own physical deterioration. Meanwhile, I watched Zelda—former organizer of Fourth of July kitchen band marches—fade into confusion. To be at her side through the slow, agonizing loss of her Self would prove to be the most affecting experience of my life. It soon became clear that the course I was chronicling was strewn with striking contrasts: moments of high hilarity and wrenching despair; snapshots of the struggle for dignity in the face of decline; arcs of mood between fear and optimism, gratitude and resentment. Hobbling my efforts to navigate these troubled waters was the crushing blow of friends and family members challenging my motives, questioning my trustworthiness.

This enterprise had much to teach me about life and death, human limitations, faith, and endurance. The struggle, as they say, was real. But the joys and rewards were every bit as genuine.

Why I wrote about it:

As my time with Dad and Zelda ended, a fresh commitment shaped my mission: I had been seeking a book topic I felt passionate about. This was that subject. I would share our experiences, unique amidst all the universal similarities, to promote understanding and support others confronting the challenge of caring for those who once cared for us. I chose the memoir format because, as dementia robbed Zelda of her voice, my journal became the story; it painted a complete and authentic picture for readers. Memoir also allowed for the interweaving of  family history, a fleshing out of characters, and a means of affirming through narration the individual’s continuing worth, untainted by the loss of physical and cognitive abilities.

ABOUT THE AUTHOR

Sue Anne Kirkham is a freelance writer who blogs atwww.yourrecipesforlife.com. She has published print articles on aging and family relations as well as online profiles of inspiring everyday heroes, and essays on health-conscious living and the peculiarities of contemporary culture.

FOLLOW THE AUTHOR:

 

FOLLOW THE AUTHOR:

Author website: www.lovingzelda.com

Author Facebook page: @LovingZeldaCaregiving/

Twitter: @SueAnneKirkham1

LinkedIn: Sue Anne Kirkham

12 years ago seems like yesterday

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Twelve years ago today, my father died from complications of Alzheimer’s disease. That morning I had received a call from the memory care unit where Dad had lived for several years. The nursing manager of that unit said if I wanted to see my father again before he died, I should come as soon as possible. (I had spent a week with him the month before and knew that his prostate cancer would most likely hasten his death.) I first called my husband at work to let him know I would find a flight from Seattle, WA to Medford, OR and be gone…for how long? I didn’t know. Then while on the phone with my brother and sister, I booked my flight online with a tentative return, threw the very minimum of clothing in an overnight bag, and headed to SeaTac International Airport.

If you have read my novel, Requiem for the Status Quo, you’ve pretty much read the account of what transpired for me at my father’s bedside; some of the happenings that day/evening were altered, but the gist of what transpired are contained in Chapters 41 & 42.

Upon my return to Seattle, my energy level was depleted yet still on alert. When you have a loved one with a debilitating disease, a state of alertness is the norm – the status quo of constantly being in a state of emergency, if you will. You keep waiting for the phone to ring with the latest development – such as it did for the last time on October 13, 2007 – but that phone number’s appearance on my Caller ID had ceased.

What hadn’t ceased was the business of dying – all the financial and estate matters one cannot ignore – but because of my father’s diligence and organization leading up to his Alzheimer’s diagnosis, much of what I needed to do on behalf of his estate and us survivors, was readily dispatched in the months that followed my father’s death.

But the “now what?” of life post-caregiving was front and center for me. Initially, I wanted absolutely nothing to do with anything having to do with dementia. I continued to financially support my local Alzheimer’s Association and participated in one more Walk to End Alzheimer’s, but that was it. Then my heart called and I became an Alzheimer’s Association caregiver support group facilitator and shortly thereafter, I entered the world of long-term care advocacy by becoming a Washington State LTC ombudsman, both of which I did for five years.

Then my heart spoke to me again, this time it said, “How about writing about your experience as Dad’s caregiver?” I ignored that thought until I no longer could – it wouldn’t leave me alone! I dragged out all of Dad’s records and my numerous journals, sat at my dining table, and over many months’ time, outlined how I would honor my father’s journey and my family’s experience within the pages of a book that might benefit others.

That was five years after my father’s death. My book was published five years later.

Now twelve years after the end of my father’s Alzheimer’s journey,

my book still manages to make its way into the hands of those who need it.

If you, or someone you know, needs encouragement and a renewed sense of hope,

please make your way to your favorite bookstore, or find it right here.

Blessings to you today, and always.

September is World Alzheimer’s Month

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In celebration of the many former and current family caregivers in the world, and in honor of their loved ones with Alzheimer’s or other dementia, AlzAuthors has released the eBook of Volume II of Alzheimer’s & Dementia Caregiving Stories. The introductory price is only $1.99. Be sure to get your copy now!

Status Quo or Same-O Same-O

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How often have you felt defeated because your day-to-day existence is somewhat routine and boring?

The life of a family caregiver, attending to a loved one with a disease or malady that is all-encompassing, is never Same-O Same-O. Any semblance of status quo flies out the window shortly after taking on this learn-as-you-go caregiver role. The boring life about which the family caregiver used to complain no longer exists as she or he memorializes that long-abandoned way of living. My memorial to status quo existed while attending to my father during his Alzheimer’s journey.

Requiem for the Status Quo speaks of that memorial to things that once were.

One Week Only: discounted books about Alzheimer’s and other dementia

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AlzAuthors is celebrating their four year anniversary as an entity by offering many discounted books for an entire week, but that’s not all. The Longest Day – which starts this discounted week-long period – is known in the Alzheimer’s community as a day to celebrate and honor those with the disease, and those who have passed from the disease.

AlzAuthors honors each caregiver – past and present – who has experienced the struggles inherent with helping a loved one with Alzheimer’s disease or any other disease under the dementia umbrella; they are offering this discounted book purchasing opportunity to everyone who might benefit. If you know of someone in that category, please share this post with them – you will be doing them a great favor. Click right here to discover the discounted prices, then click on the book cover (or covers) of the books you wish to purchase, and you’ll be directed to the purchase page for each book. It’s that easy!

Time to fill your bookshelves with discounted books about Alzheimer’s disease

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Starting Friday, June 21st, the longest day of the year AND The Longest Day as celebrated in honor of those who have Alzheimer’s or other dementia or who have lost their lives to this always fatal disease, several AlzAuthors will be discounting their books so you will want to fill your shelves – virtual or otherwise – with several excellent sources of support.

These authors will generously discount their books for an entire week. Set your calendars so you don’t forget!

The link to these discounted books will be provided soon!

Sustenance for the family caregiver

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In a recent interview with Oprah Winfrey, New York Times columnist and author, David Brooks, eloquently responded to Oprah’s statement where she said, “I hear that authors write the books they need to read.” Mr. Brooks’ response:

We writers are beggars who tell other beggars where we found bread.

He further explained that statement by saying:

We found it here, we want to share it with you.

That is what the more than 200 AlzAuthors have in common. Each author may describe their quest or mission somewhat differently, but no doubt many of them would agree that the impetus to write about their personal experiences was a call to action they could not ignore.

As a member of the AlzAuthors community, I personally feel that the more mainstream the conversation surrounding the Alzheimer’s and dementia experience becomes, the more the AlzAuthors’ vision will be realized:

Our vision is to lift the silence and stigma of Alzheimer’s and other dementias.

May you find sustenance within the AlzAuthors community.

My extraordinary success as an author

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A lot of time and effort go into writing a book. Regardless of the genre, much needs to take place prior to that work of art arriving in the public’s eye to be consumed. The writing process is grueling: outlining; picking character names – developing those characters to become who you need them to be, killing off characters that don’t add anything to the storyline or content; researching anything and everything having to do with absolutely every topic you decided to include within the front and back covers of your project; pounding out page after page of your shitty first draft – because every first draft is shitty; editing, cutting and pasting, throwing out your manuscript and then retrieving it from the garbage because you can’t bear to give up on something that initially seemed to mean so much to you.

But the preparation for my novel began years before I knew I would even be writing it.

My life changed forever when my father was diagnosed with Alzheimer’s disease. Up until that point, AD was something that happened to other people. Just like everyone else, I was afraid of it – had friends whose parents or other loved ones were diagnosed with it – but just like everyone else, I really and truly did not think it could get close enough to harm me, but it did. You see, I had hoped my professional work in the assisted living and memory care field would be as close as I would ever get to the dreaded disease that is always fatal, but I was wrong.

As my author bio states: Having previously worked in memory care, she was not new to the disease, nor was her family immune.

Years after my father’s death I chose to prolong my involvement with all things dementia, venturing forth into one of the most competitive fields around because it appears that everyone … everyone … has a story to tell, and many have chosen to tell it. With well over 8 million books currently available on Amazon and just a fraction of those touted as Best Sellers, a person would be crazy to even think about adding to those numbers!

Or that person would be brave.

Bravery sounded better than crazy to me, knowing that putting myself out there would leave me vulnerable, exposed before every critic who, although a reader and not an author, would not shy away from tearing apart my completed labor of love. But I wanted something positive to result from my father’s and my family’s Alzheimer’s experience so rather than shying away from risking failure, you know, doing nothing that might prove disheartening, I chose to lay my heart out on the line.

And I am a success.

I am a success, not because Requiem for the status quo made it to Oprah’s book club and/or the New York Times’ Annual Top Books list, and certainly not because of any wealth publishing a novel has brought me…relatively few authors make money in this field. I am a success because I let my love for my father be translated into a novel, creatively based on my own family’s experience, so that others – whether a million in number or just a thousand – could find some encouragement and hope through the ashes of my family’s grief.

And guess what, others read my story and told me time and again how much it resonated with them; how my writing seemed to mirror what they too went through, or were currently going through. Readers thanked me for my story … they thanked me! If that isn’t success, then I don’t know what is.

All I can say is, “You’re very welcome.”

 

 

A book for family caregivers

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Although my novel, based on my own caregiving experiences for my father, focuses on the challenges faced by those caring for someone with Alzheimer’s disease or other dementia, it also benefits Every Caregiver – that universal person who finds her or himself as the primary individual caring for a loved one with a debilitating illness.

My prayer is that Requiem for the status quo helps everyone struggling to balance their own needs with that of their loved one.

A wealth of books about Alzheimer’s disease

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AlzAuthors is a community of more than 200 extraordinary authors who have written about Alzheimer’s disease and other dementia. Today I am spotlighting those books written by the community’s supportive management team, of which I am a member. Please take time to visit the six books spotlighted below. I truly believe you will be glad you did. Let AlzAuthors light your way through Alzheimer’s and dementia.

Alzheimer’s Daughter – a memoir by Jean Lee. A poignant accounting of a family’s life after both parents were diagnosed with Alzheimer’s disease on the same day.

Blue Hydrangeas – an Alzheimer’s love story by Marianne Sciucco. A touching account of a couple’s journey into Alzheimer’s and of the love that never succumbed to the disease.

Somebody Stole My Iron: A Family Memoir of Dementia by Vicki Tapia. This engaging memoir offers useful information from experts within the field of Alzheimer’s research, personal lessons the author learned along the way, and ideas and tips for managing the day-to-day ups and downs of dementia.

Weeds in Nana’s Garden by Kathryn Harrison. A heartfelt story of love that helps explain Alzheimer’s disease and other dementias geared toward the children in our lives.

Motherhood: Lost and Found – a memoir by Ann Campanella. A memoir of the ordinary and extraordinary courage of those who endure debilitating and even crushing illness, and those who suffer with them when they do so.

Requiem for the Status Quo by Irene Frances Olson. A novel that explores the delicate balance of families upended by Alzheimer’s disease and how they manage their loved one’s needs with their own.

This Week’s Good News!

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This week’s story comes to us from the UK where a supermarket chain pulled out all the stops to keep a woman on staff, regardless of her limitations. It is not often that a person’s company feels like family, but that was definitely the case for Ms. Salomon’s working experience.

This Week’s Good News!

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Who doesn’t like a little pampering now and then? A Stanwood, WA retirement community believes everyone should feel a sense of worth and pride when it comes to appearance, knowing that it’s not just how you look that is most important, it’s how you feel. I am quite certain you will love this story that celebrates the gift of volunteerism.

Another step to honor my father

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Who would have thought when I started my publishing journey to honor my father’s life – a life that was cut short because of the scourge of Alzheimer’s disease – I would one day be featured as part of Maria Shriver’s efforts to combat Alzheimer’s disease in women? But I am!

The Mission of Women’s Alzheimer’s Movement (WAM):Every 65 seconds, a new brain develops Alzheimer’s. Two-thirds of the brains with Alzheimer’s belong to women, and no one knows why that is. The Women’s Alzheimer’s Movement is determined to find out. Founded by Maria Shriver, The Women’s Alzheimer’s Movement is a nonprofit organization that is dedicated to raising awareness about women’s increased risk for Alzheimer’s and to educating the public — women andmen — about lifestyle changes they can make to protect their brain health. Through our annual campaigns and initiatives, we also raise dollars to fund women-based Alzheimer’s research at leading scientific institutions, so that we can better understand this mind-blowing disease and hopefully get closer to a cure.

My contribution, Where the Rubber Meets the Road: Personal Caregiving, is a transparent look at the challenges every dementia caregiver faces, even for a personal caregiver who had years of professional memory care experience, as did I. If you know of someone who could use some encouragement – whether they are caring for someone with dementia or another debilitating illness – I hope you will share my Women’s Alzheimer’s Movement piece with them; doing so would honor my father, and all those current and future caregivers who just might need some additional support in their corner.

This Week’s Good News!

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The softer side of law-enforcement is front and center in this post. I hope you enjoy it as much as I did. What a wonderful way to celebrate the start of the spring season!

This Week’s Good News!

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Wow! Talk about making lemonade out of lemons! Joe Bahr suffered the loss of his brother, Marty, to Alzheimer’s disease. Joe and Marty made a deal before Marty passed on. Check out here what that deal entailed. What a legacy Marty left for the rest of us!

Get your discounted copy today!

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And if you act now, there are a few copies available that are ridiculously priced for under $13. Act now while supplies last!

Discounted book about Alzheimer’s!

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The eBook and audiobook of Requiem for the status quo will continue to be available on Amazon until the end of 2019. I am going to self-publish the paperback version through my publishing arm, Words Matter Press so as of March 1, 2019, you will not be able to purchase a paperback copy for your bookshelf until Words Matter Press’s Spring 2019 release on Amazon.

 

In the meantime, the Amazon paperback price for the month of February has been reduced so those who want to add this book to their library can do so at a discounted price before supplies run out. If you are a Prime member, shipping is FREE! 

Let these recent reviews encourage you to get your copy today!

Rubies My mother recently died from Alzheimer’s, and I could really relate to everything she wrote about. All her information is very accurate, and I felt like she was on the journey with me.

Vicki T. Olson draws in the reader, introducing us to the Quinn family, including protagonist Colleen, daughter and primary caregiver for Patrick, her beloved father, diagnosed with Alzheimer’s disease. The author deftly weaves together the stages of this dreadful disease throughout her fast-paced narrative and in so doing, educates us on the progression of this always fatal disease. The characters are down-to-earth and believable, the story sprinkled with both humor and the pain of loss. A must-read for any caregiver whose loved one has been diagnosed with dementia.
Ann H. Irene Frances Olson does not flinch from the specific cruelties of Alzheimer’s disease in this novel, and I admire that very much. It is devastating to lose someone you love, bit by bit; devastating to watch them struggle to think as their brain is constricted by plaques and tangles. That said, this is also the story of how taking on the role of caregiver can be incredibly meaningful, even though it is also impossibly exhausting. In this case, an adult daughter is caring for a father she loves, and their mutual affection is made very poignant by the toll of the illness.

 

Weather got you down? Read a book!

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Boy do I have a book for you. The paperback of Requiem for the status quo is discounted until the end of February. For only $13.95, you can add this book to your To Be Read (TBR) list!

If the Ebook is more to your liking, it is currently just $4.99 or free to Amazon Unlimited subscribers. It will always be available, but the paperback will not be, at least until later this year.

Hurry while supplies last! Discounted price!

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Requiem for the status quo was picked up by a publisher two years ago this month. The eBook and audiobook will continue to be available on Amazon through Black Rose Writing until the end of 2019. I am arranging for different publishing options for the paperback version, however, and will be releasing that paperback later this year.

In the meantime, my publisher and I reduced the paperback price for the month of February so those who want to add this book to their library can do so at a discounted price. If you are a Prime member, shipping is FREE! When I self-publish my novel I’ll be sure to send out an announcement so you’ll again have access to the paperback version through Amazon. And of course, the eBook is still available on Amazon and will continue to be available forever and a day. (I will self-pub the eBook at the end of the year.)

Let these recent reviews encourage you to get your copy today!

Jill W. I’ve never written a review when I’m only halfway through a book, but I wanted the author to know sooner rather than later, how much her book has affected me emotionally. My family has been dealt the dreaded card of dementia so reading REQUIEM FOR THE STATUS QUO has been difficult since we’re living Coleen and Patrick’s nightmare now. I find myself only able to read pieces at a time because the author has done a superb job of making Patrick and his family’s battle with this horrible disease, so real. Last night as I read, I found myself laughing and then crying. This book is a must read for anyone touched by Alzheimer’s or dementia.

Ann C. Irene Frances Olson writes believable fiction. Her characters are kind, funny and endearing — even in their flaws. When Colleen takes over her father Patrick’s caregiving because of his advancing memory issues, the reader can’t help but be moved by the tender relationship between them. The effervescent Colleen finds herself in a challenging life situation — pulled between her father’s condition, her working life, her brother’s disdain for her father’s illness and her own desire for companionship. Having experienced the devastation that Alzheimer’s can bring to a family, it was both heartbreaking and a joy to follow Colleen’s path. Yes, there was loss, but the author helps us see the beauty and courage in facing the inevitable challenges of aging and how it’s possible to do it with grace and love.

Jason This book is about the many faces of Alzheimer’s, from those how bear the thief in their brain to those who must cope with and care for loved ones. The story is straightforward and written with love, it is a daughter’s anthem of love for her father while also being a support for others facing the journey of incremental loss. Colleen describes it best when she identifies Alzheimer’s as a thief robbing us of our memories and our future. If you or a loved one are walking this journey, this story is sure to give both a sense of how to make this journey possible and how to mourn with others on the path.

This Week’s Good News

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Guess what the currency of media is? OUR ATTENTION.

Don’t invest in bad news, invest only in the good!

Ron Robert doesn’t believe in giving up even after being diagnosed with Alzheimer’s disease. He was a retired man who was extremely bored with his life and when he received the diagnosis so many of us fear, he enrolled in University to get off his butt and once again get involved in life. Read this astounding article that contains some of the best news about Alzheimer’s I’ve heard in quite some time.

Time’s running out: discount book sale ends late 11/13

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All of the books shown in this graphic are part of the AlzAuthors Caregiver Appreciation week-long sale, starting today, November 7th. You’ll see my novel, Requiem for the status quo, in the upper right corner that is priced at 99 cents from Nov 7th through 13th. To link to all the books you see above, click on the AlzAuthors link here. Simply click on the book’s image and it will take you directly to its page on Amazon, making it extremely easy to purchase as many titles as you please. And don’t forget to gift others with titles as well. It’s so easy to do and the recipients of your gifts will be so pleased that you’ve thought of them.