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.

Tuesday, April 24, 2018

Meet Paul Toolan, Author of "A View From Memory Hill," a Collection of Short Stories on Memory, the Past, Ageing, and Loneliness

Republished with permission from AlzAuthors.com



By Paul Toolan

I live in an English rural village with a demographic weighted towards retirees. I’m one of them, I suppose.


There are young people too, but older bodies tend to fill the shops and the midday streets. I find myself reflecting on these sometimes solitary folk, about their past lives and the people they’ve known. Have they forgotten more than they care to remember – or just forgotten?

The stories in A View from Memory Hill were triggered by such images, nudged along by Kierkegaard’s idea that we live life forward but only really understand it backwards. Their settings come from the everyday world – a chemist’s shop, a village square, a railway station, a College, a pub, the bus journey from work to home – as well as real places. In the first and last stories in the book I used local outdoor settings. The title story is based on Ham Hill, an ancient hill fort in Somerset which I often visit. I take photographs to help me remember!

For perspective, I introduced younger voices too, and enjoyed exploring that sometimes-land of modern misunderstanding, where the old and the young coincide. A range of characters evolved, and broad themes firmed up as I continued to write: memory, the past, ageing, and loneliness - and the positive antidote of choosing to take action to avoid being lonely.

For structure, I opened and closed the 12 stories with the same pair of characters: Jack - who has Alzheimer's - and Maeve, his wife. I guess they are distillations of various articles and documentaries I’d read and seen about dementia, and about Alzheimer's in particular. Maeve has become Jack’s carer. Alzheimer's couples may recognise her predicament:

“Jack was sleeping on the day-bed she’d rigged up in the conservatory. When he was bad, any sleep would do. She was Jack’s dictionary now, non-stop, exhausting, the reference book for all the objects, all the people he could no longer name. The butt, too, of each resulting outburst.

‘Do you know nothing?’ he would yell. ‘Nothing?’”

Despite Jack and Maeve’s difficulties, memory still breaks through, and with it, joy and laughter.

In between, the other stories explore the book’s themes through a range of genres, including crime, social satire, gothic noir, and romance, to give a variety of reader experiences.

So far, reviewers have enjoyed these “wonderful insights on ageing”.

“I felt nostalgic when I finished reading,” said one reviewer. “Where have the years gone? So many memories had me a bit emotional, truthfully.”

For me, if I’ve triggered emotion and insight in my readers, on such important themes, then I’m a happy man.


About the Author

Paul Toolan hails from the United Kingdom, a Northerner who now cheerfully admits being a southern softie living in rural Somerset. After a successful career in Colleges and Universities he wrote book/lyrics for stage musicals, before "turning to crime." A Killing Tree and A January Killing, the first two books in the Detective Inspector Zig Batten series, are set in the apple orchard landscape of the West of England. Look out for the third, An Easter Killing. A View from Memory Hill is Paul's first short story collection, exploring themes of ageing, memory, and personal realisation. Like Inspector Batten, Paul enjoys walking, gardens, fishing, music and the occasional whisky. Unlike him, he enjoys sport and the taste of mushrooms, and loves travelling to sunnier climes - Greece in particular.

Connect with Paul Toolan

Wednesday, April 18, 2018

Norman McNamara lives with Lewy Body dementia and has authored “The Lewy Body Soldier”

Republished with permission from AlzAuthors.com

My name is Norrms McNamara. Someone once told me having Lewy Body`s Type Dementia is like having two diseases, you HAVE Dementia, and you KNOW you have Dementia. The same person, a Consultant, also told me that right up to the end of life, the person with Lewy Body’s will still have moments, if not hours/days of clarity. I lost both my Father and incredibly wonderful grandmother to Dementia. (I say that because she brought me up, I am who I am today because of her)

I have read the book, seen the last page, read the last line, I know what happens and know what can happen unless they find a cure for this awful disease. So when I was diagnosed myself nine years ago, aged just 50, I was absolutely petrified, and with good reason.

No cure, no sign of a cure on the horizon and after checking out what help there was available for somebody my age with dementia, which turned out to be practically non-existent, I was at a loss at what to do. I was so lucky in one way because my wife Elaine had been, and still is a carer for 30+ years and it was her who helped me get my diagnosis as she recognised the signs.

So what’s changed in the last nine / Ten years? A huge amount actually, we now have memory cafes all over the world, we have so many groups globally connecting up and beginning to talk about this disease. We have TV adverts, politician’s talking about it in Government’s and generally a better understanding, so why, oh why, is it still in the shadows when it comes to

TELLING THE TRUTH ABOUT THIS DISEASE!!?

It is only because relatives of those with Dementia and those actually living with dementia have started to write books about it are we starting to know the real truth about this disease, and this is exactly what this book is all about. This is a book written by someone who has Lewy Body’s type dementia but is still lucky enough to have the abilities, with a LOT of help, to write it, but let’s make one thing clear

This book is not for the faint-hearted.
This book is not about Clever Medical Terms or graphs.
This book doesn’t wear Rose tinted glasses.

This book is about not only about how hard it is to live with this awful disease, how hard it is to get help etc., but ALSO a book of helpful hints about HOW to get help, what to do when you go for a diagnosis and what to do after. It’s a book of hope, but most of all it’s a book of truth, and about, as they say,

“Hearing it right from the horse’s mouth.”

I am at peace with my illness, I believe every day is a bonus and every breath I take is a blessing, and no matter what happens, if I can give a little back to all those around me who have helped me along my way, then so be it.

Best wishes, Norrms Mc Namara, Founder of Global Purple Angel dementia awareness Campaign



Now recognised in 55 Countries around the world with 860 Global Purple Angel dementia ambassador’s.

To find out more please contact

https://www.purpleangel-global.com/



Facebook
https://www.facebook.com/norm.mac1

Twitter

@Norman Mc Namara

Amazon book also availiable on Amazon USA and Amazon EU

https://www.amazon.co.uk/Lewy-Body-Soldier/dp/1536805874

Wednesday, April 11, 2018

“Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion” written by Vicki Kaufmann


Reposted with permission from AlzAuthors.com

By Vicki Kaufmann, MA, MPSt

“Cobwebs in my mind!” was how my mother depicted the disease that ravaged her brain. Mom was diagnosed with Alzheimer’s and vascular dementia in May 2000, after episodes of TIA’s and early signs of dementia. She was 82 years of age. This was a major turning point in the life of our family. For me, it was the birth of a challenging new creative phase.

I was in my 50’s, at the top of my professional career as CEO of a large social service agency. Even with professional training and master’s degrees in family studies and family counseling, I was not prepared to take on the role of daughter caregiver, looking after my frail, elderly parents.

I began to write poetry and keep a journal, jotting down what worked for me as each new trial unfolded in dealing with an unsympathetic health care system and the bewildering assisted living scene. I made a promise to myself that, when I had the time, I would write a book for family caregivers, filled with tips and ideas that I found helpful during my seven years of caregiving. Nine years later, after the deaths of both parents and shortly after I retired, I fulfilled this promise, completing my book, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion, November 2015. On August 6, 2016, my book won gold and silver medals at the “President’s Awards” event of the prestigious Florida Authors and Publishers Association.

Being retired, I can now give back to the community in other ways. In June 2015, I initiated a website, “CaregiverFamilies.com,” along with a free e-newsletter dedicated to providing tips and resources to family caregivers of loved ones with dementia. I blog twice a month on aspects of dementia caregiving, and I maintain a “Caregiver Families” Facebook Page, an Author Facebook Page, and a “Caregiver Families” Pinterest Page. I also volunteer with my local Alzheimer’s Association for their Speakers’ Bureau, and make myself available for other speaking engagements.

Two of the greatest compliments I could ever receive about my memoir came from the national Dementia Action Alliance’s Board Chair, and from Alzheimer’s advocate/author Maria Shriver. “It’s outstanding! It was so inspiring, so warm! I don’t have the words to describe your book,” claimed Jackie Pinkowicz of the Dementia Action Alliance, leaving this message on my cell phone in the spring of 2016. This past December, after Ms. Shriver read my book, her assistant made a request to post one of the book’s chapters on their website, “The Women’s Alzheimer’s Movement.” I invite you to read Chapter 11.

A decade ago when I was caring for my mother there were few resources to support my role. I am glad that caregivers and those living with the disease are coming forward to write and discuss their challenges, joys and heartaches, and advocate for a cure. I hope that my writings and contributions are making some impact for good in the lives of fellow caregivers.

Purchase Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion

About the Author

Through CaregiverFamilies.com and her award-winning book, Elegy for Mom: A Memoir of Family Caregiving, Alzheimer’s, and Devotion, Vicki Kaufmann hopes to provide “tender loving care,” support for the caregiver, and practical tools and resources to educate family members about Alzheimer’s and related dementia. Her mission is to provide information on the stages of Alzheimer’s, better coping methods, and assurance, so you know you are not alone in this journey.

Vicki Kaufmann, MA, MPSt, is a retired certified family life educator and counselor. She discovered great joy and blessings in the seven- year period, from 1999–2006, when she was a caregiver for her elderly parents. Her mother suffered from vascular dementia and Alzheimer’s. Read about Vicki’s journey.

Vicki knows the importance of a family support system, having counseled hundreds of couples and families during her twelve years as a certified family life educator, and marital and family counselor. In addition, she has over thirty years experience in nonprofit management, professional fundraising, community and public relations, and collaborating with numerous social service and ecumenical organizations.

Connect with Vicki Kaufmann

Caregiver Families Website

Caregiver Families on Facebook

https://www.pinterest.com/caregiverfami/caregiver-familiescom/

Facebook Author Page

Wednesday, April 4, 2018

Angel Smits: "When Reasoning No Longer Works"

Article reposted with permission from AlzAuthors.com

By Angel Smits

How does a romance writer end up writing a book about Alzheimer’s care? That question nearly stumped me, not because I don’t know how—I lived it—but because it’s a lot bigger question than it seems.

I’ve always written, always played with words and stories—ever since I was a kid. And romance has long been one of my favorite genres to read as well as write. It was a natural path to write romance when I started to focus on my fiction.

But I’ve also always known how hard it is to make a living writing, how competitive it is.

In college, I figured out that I needed to have a Plan B, a way to support myself—just in case writing didn’t work out. I’d worked in a nursing home in high school and enjoyed the people, so when I found a class in Gerontology was offered, I signed up—and promptly fell in love with a second?—first?—career.

Ever since, I’ve really never been able to decide which I enjoy more. I’ve published in both areas; mostly articles when it came to my Gerontology work and now nine romance novels, primarily for Harlequin.

While I was learning my writing craft, I kept working with the elderly, first as a social worker then later as a director for secure specialized units for Alzheimer’s patients. At night, I wrote and sent my fiction off to publishers while during the day I created care plans, social histories, activity schedules and training staff how to provide the 1-1 care we specialized in.

I can proudly say that the work paid off. I got my first publishing contract and the special care units I ran were full with waiting lists for potential residents. I felt like I’d reached both my dreams. 

One day I was in my office and the wife of one of the residents asked to see me. She looked upset and came in to sit across from me. She visited her husband nearly every day and participated in the activities with him. I knew her pretty well and it hurt to see the tears in her eyes.

She asked me a question that still haunts me. “You teach all these young people, these strangers, to take care of my husband.” I felt my pride swell at her praise. Then she continued. “Why can’t you teach me?” And I stared at her pain.

Her words hit me hard, like a bolt of lightning—and not exactly pleasantly. Why hadn’t such a thing ever occurred to me? I don’t know why, but it hadn’t. I was just so caught up in my job, in the fact that it was how the industry worked, that I didn’t think beyond those parameters.

But those words stuck with me, haunting me. When I started the next class of trainees, I saw things differently. This knowledge I’d gathered, that I was teaching, was easily something family members could learn—and something many wanted to do.

It was one of the biggest aha moments of my life.

I had the idea for the book for several months before I figured out how to do it. Just like in training, I wanted to use case studies to help illustrate the information. Finally, my fiction brain kicked in, and I came up with Rose and Lou—a couple much like the people I’d worked with every day. It felt right to blend the fiction with the training tools.

By the time I’d finished When Reasoning No Longer Works, I was writing primarily fiction and I’d moved away from working in the senior field. My focusing is now on using my words to help those dealing with caregiving. My fiction has senior characters, a couple with dementia, where I’ve slipped in some of my tips. 

The melding of both my passions now seems natural to me. I’ll always be grateful to the woman who asked me that one simple question that changed my world, and showed me how to share what I’ve learned with others who need it. 


Social Media



https://twitter.com/Angelwrite

Article reposted with permission from AlzAuthors.com

Friday, March 30, 2018

Meet Linda Brendle, Author of “A Long and Winding Road: A Caregiver’s Tale of Life, Love, and Chaos”




The Accidental Author

by Linda Brendle

My goal in life was not to become a writer. I enjoyed writing when I was younger, and I toyed with the idea of making a career of it until I received my first negative review from an English teacher. I don’t take criticism very well, and I took her comments personally. Years later, though, after the sting of her rejection had faded, and especially when I became a caregiver, the need to express myself resurfaced.

Becoming a caregiver was not one of my ambitions either. When I was in the seventh grade and was asked to write an essay on “What I Want to Be When I Grow Up,” my choice of careers was not caring for my aging parents. However, when a loved one has a need, you step in to help. Then, whether by small increments as the need progresses, or all at once because of a catastrophic event, you realize that you have become a caregiver.

When I became a real hands-on caregiver, I often went to Aunt Fay for advice. She’s Mom’s younger sister, and she cared for both her mother and her husband for many years. One thing she told me was to keep a journal, because one day my experiences might be of help to someone else, and I took her advice. I didn’t write every day, but after a particularly trying episode, I’d write about it and post it on Facebook. It was a safe way to vent, people responded positively, and I was encouraged to continue to write.

Later, my husband David and I bought a motor home and fell in love with the RV life. We were both retired, so we decided to take an extended trip through the southeastern part of the United States. Mom and Dad were living with us by then, so they were included in the plans. I knew that sharing a tiny living space with two people with Alzheimer’s, even two people I loved dearly, would lead to many trying episodes, so I took along several of my favorite pens and a spiral notebook.

Initially, I had no larger purpose in mind than to keep a record of our travels and perhaps gather material for a few Facebook posts. But situations that can be overlooked in a 2,600 square foot home are in your face in a 40-foot RV, and I began to pay closer attention to what was going on. I discovered more than I wanted to know about how much Alzheimer’s had taken from Mom and Dad. I realized that the simple tasks of taking a shower or shaving had become overwhelming, and simple decisions like ordering from a menu were impossible. I also recognized my own denial of our new reality.

By the time our journey was nearing its end, I began to wonder if my journal might be more than just a practice exercise, and visions of a book danced in my head. Once we were home and settled, I transcribed the handwritten manuscript onto my computer and polished it a bit. I asked my son, who had already published several books, to take a look at it. His response went something like this:

“You tell a good story, but where is your story? Why are you in Florida; why are you caring for your parents; and who is David?”

I went back to the keyboard, and for the next several years I edited again and again. I worked hard to break through the protective barriers I had built around my own feelings and to share the harsh realities of this horrible disease and the good, the bad, and the ugly of how I dealt with being a caregiver. When I finally went public, my readers said my story made them feel less alone. By exposing my own fears and failures, I had given them permission to accept their own shortcomings, and to tell their own stories.

I began to write because it was personally therapeutic, but I continue to write because my stories touch others. People who have little joy left in their lives laugh with me at the antics of my sweet family; those who have shed an ocean of tears are encouraged when they discover that someone else understands; and some who feel like caregiving is a dead-end are inspired to keep living in spite of their situations. My book isn’t a best-seller, but as it helps ease the burden of those who are dealing with Alzheimer’s, it somehow gives a sense of meaning to Mom and Dad’s struggle – and that is all the success I could hope for.



About the Author



I cared for my mother and father, both of whom had dementia, for fifteen years. After that season of my life passed, my husband David and I moved to the country where I work part-time at my church, garden when the notion strikes, tend to the whims of the feral cat who took over our home two years ago, and write about all of the above.

Connect with Linda Brendle

Blog

Facebook

Twitter

Wednesday, March 21, 2018

Meet Meg Foster, author of “7 Spiritual Steps for Caregivers: A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving”


7 Spiritual Steps – A Journal to Ease the Way


By Meg Foster

According to Alzheimer’s International, globally, there are nearly 44 million people that have Alzheimer’s or a related dementia.

In America alone, there are 5.3 million living with Alzheimer’s disease. 74% of caregivers of people with Alzheimer’s disease and other dementias reported that they were “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver.

Certainly these caregivers and their loved ones are in a health care crisis

The immediate needs of these families in crisis are practical care coordination support and resources. But as those needs are sought by families, which is no easy task unto itself, there are also emotional and spiritual needs of the caregiver that cannot be overlooked, but are in most instances.

I summarize that need as Spiritual Health – the emotional, physical, spiritual and social well-being that is critical for caregivers to sustain this caregiver journey.

I was the caregiver to my husband Dean, who was diagnosed with Frontotemporal Dementia (FTD). It was a tough, long path of seven years for Dean. But for me, as his caregiver, I was on a different but related path – the caregiver path.

Often Alzheimer’s and dementia caregivers feel lost, alone, and overwhelmed. I wrote 7 Spiritual Steps for Caregivers: A Path to Meaning and Hope in Alzheimer’s & Dementia Caregiving to alleviate those feelings with a self-awareness process and tools. This is a straight forward structured guidebook for family caregivers to discover and build upon their spiritual health foundation which will strengthen them for this arduous journey.

Through growth in self-awareness and the strengthening of a spiritual foundation, caregivers can then experience ease, meaning and hope in the reality of their daily caregiving duties with their loved one thus reducing stress, anxiety, and feelings of being lost, alone and overwhelmed.

The feedback on the book has been positive and I’m excited to share this information. A recent Amazon book reviewer said, “Good resource and worksheets for caregivers. It gets you through the process with more grace and forgiveness, so that you can be the calm in the storm.” I hope many others can have easy access to spiritual help and that gives me satisfaction that my experience can be useful for others. There’s an ebook, paperback and expanded journal paperback available on Amazon.

Wishing you Light on your Caregiver Path,
Meg Foster





Connect with Meg Foster


Wednesday, March 14, 2018

Welcome back, Joy Johnston, author of “The Reluctant Caregiver”


By Joy Johnston

Not everyone is born a natural caregiver.

Unlike some caregivers who can draw upon their experience as a parent or time spent taking care of siblings when they were younger, I had no such reservoir of caregiving knowledge when my parents fell ill. An only child who lived 1,300 miles away from my parents, my father began showing signs of dementia while I was in my mid-thirties. Assuming the role of long-distance caregiver, I helped my mother by paying bills, sending supplies, and researching care options.

It was not until six months after my father’s death, when my mother suddenly fell ill and was diagnosed with colon cancer, that I became a primary caregiver. I was woefully unprepared and frankly, reluctant to step into the role. My mother required emergency surgery and faced a lengthy recovery. I ended up quitting my job and temporarily moving to New Mexico to care for her. What followed was a crash course in caregiving, with all the ups and downs that comes with the territory, like the most terrifying roller coaster in the world. (I’ve always hated roller coasters.)

For the next several months, I served as my mother’s caregiver and patient advocate. My mother suffered complications and required rehab in a skilled nursing facility. I filled out copious amounts of paperwork, ensured my mother was getting proper care, and made modifications to her home for her eventual return. Caregiving is physically, mentally, and emotionally the most challenging job I’ve ever had, and it gave me a whole new appreciation for caregivers.

I began writing essays about caregiving when my father was in the memory care center during the last year of his life, and continued writing through my mother’s battle with cancer. The essay writing was both therapeutic and empowering. I submitted some of these essays to online outlets and found they generated a passionate response. Fellow caregivers seemed to appreciate my nontraditional perspective and opened up about their own difficult caregiving experiences. This encouraged me to release The Reluctant Caregiver, a collection of these personal essays. My brutally honest writing style contains language that some may find objectionable, but the essays also depict the love, humor, and heartbreak that accompanies the caregiving journey.

There are many wonderful books for dementia caregivers and about family caregiving in general, but I felt that there are few books that speak to the Generation X and younger crowd in a realistic manner. For those familiar with the book, Sh*tty Mom: The Parenting Guide for the Rest of Us, I wanted to capture a similar tone, but for caregivers. I also wanted to be inclusive of those who may have reservations about caring for a family member and that it’s okay to have feelings of reluctance, fear, and resentment. If I survived and even became pretty darn good at caregiving, then you can too!

Note: The Reluctant Caregiver contains profanity and graphic descriptions of medical care. 


About the Author:

Joy Johnston is an experienced digital journalist who is a National Content Editor for Cox Media Group, where she specializes in creating viral content that drives web traffic and social engagement.

Joy received the 2015 Rick Bragg Prize for Nonfiction from the Atlanta Writers Club. Her work has been published in Chicken Soup for the Soul and other anthologies. Joy also works to raise awareness of Alzheimer’s and caregiving through her blog, The Memories Project, and through essays that have appeared in digital and print formats. The Reluctant Caregiver is her first book.

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