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



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Article reposted with permission from AlzAuthors.com