Meet blogger and author, Heidi Hess Saxton

Reprinted with permission from AlzAuthors.com

By Heidi Hess Saxton

When the Unthinkable Becomes Inevitable: The Awful Dawn of Dementia

Up to this point in my life, most of my blogging has been for parents of adopted, foster, or special needs children. Back in 2002, when my husband and I first became foster parents (and later adoptive parents), we really had no idea what we were in for. Which was probably a good thing, because I’m not sure we would have had the courage to move forward with it, had we known.

Now, as I’m entering the sixth month of caring for my mother, a dementia patient, I’m realizing that this is a lot like that. Lots of dirty laundry and temper tantrums, interspersed with moments of sweetness and delight. The tumultuous relationship we had during my teen years is gone. These past six months have been the sweetest, yet in many ways also the hardest – for both of us. But even the hard times are not without their rewards. For instance, when my daughter is being her snarky teenage self, she will do for her “Mammy” what she would never do in a million years for “Mean Old Mom.”

Best of all, I don’t have to make those bi-monthly trips to Georgia to visit her in that godforsaken place (Grace House, my Aunt Fanny), where the residents sat slumped in the half-light like so much castaway furniture. She spent most of her time on her bed, exhausted from writing notebooks full of gibberish, trying to work out why she had been deprived of her freedom, her marriage, and most of her life. My sisters and I would take her out as often as we could from our respective homes in Indiana, Washington State, and New Hampshire (plus the youngest who lived nearby but was trying to balance the demands of caring for her family, a full-time job, and both my parents), but it grew harder and harder to bring her back to the facility. More than once I begged God to take her in her sleep. I was sure I knew where she was going, and it was an infinitely better place than this.

Finally, one day when I realized that there really wasn’t any reason for her to stay where she was, I broached the subject with my father, who readily agreed that Mom would be happier with me. Just before Thanksgiving, we decided – so she could go back by the end of Christmas if it didn’t work out.

But in my heart, I knew there was no going back. “How’d you like to come home with me, Mom?” Her dull expression brightened for just a moment. “They won’t let you take me,” she said. “The judge won’t let me go.”

Somewhere in her clouded mind sat a cantankerous old geezer who called the shots. “It’s okay, Mom. Dad said I could take you – and the Judge has no jurisdiction in Indiana.” And so, her friends all gathered to celebrate her 77th birthday on that last day before we left. “I’m so happy for your mom,” each of them said to me. “She’s going to be so much better off with you.” They gave her warm track suits to insulate her from the Indiana winters, and posted pictures and letters regularly both in the mail and on the private Facebook page where I keep everyone informed of her comings and goings.

Then we got on a plane and … she was free. It wasn’t like her old life, with the man she’d loved for more than fifty years. Instead of a spacious, well-kept home she had a room in the basement with a little half-bath near my office, and she struggled to climb a flight of stairs a couple of times each day.

But how she smiled. In photograph after photograph, her eyes alight as she once more made cookies, beat us at Scrabble, sang at birthday parties, and sported a pretty Easter dress. She had been given a second chance at life. And I was going to make the most of it, for as long as I could.

There’s still so much to learn, so much I’m still figuring out. But I decided I want to keep track of the steps along the journey, in case there was someone else out there who, like me, just needed someone who could say, convincingly, “Me, Too.” So, if that’s you, welcome. Pour yourself a cup of… well, whatever strikes your fancy. I won’t judge. And let’s take the time to encourage each other, in good days and bad. Because when the unthinkable becomes the inevitable, the steadying hand of friendship can make all the difference in the world.

About the Author

Heidi Hess Saxton and her mom, Sandy, live with Heidi’s husband Craig, their teenage children, and two energetic dogs in northern Indiana. In her spare time, Heidi is a writer and editor, and blogs as often as she can at “Life on the Road Less Traveled” (for adult caregivers), “Extraordinary Moms Network” (for parents of adopted and special needs children), and “Ask the Catholic Editor” (for non-fiction writers). Her latest book is Advent with Saint Teresa of Calcutta(Franciscan Media).

Facebook: Heidi Hess Saxton (https://www.facebook.com/heidi.hess.saxton)

Twitter: hsaxton (https://twitter.com/hsaxton?lang=en)

Instagram: heidihesssaxton1999 (https://www.instagram.com/heidihesssaxton1999/)

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Meet Catherine Hodder, Esq., author of “Estate Planning for the Sandwich Generation: How to Help Your Parents and Protect Your Kids”

Reprinted with permission from AlzAuthors.com

By Catherine Hodder, Esq.

I was a corporate and banking attorney when my father began experiencing mini-strokes and having difficulty with his memory. We didn’t know at the time he was embarking on a ten-year battle with Alzheimer’s disease. And what a battle it was.

Even though I was well versed in law and finance, it wasn’t until I faced my father’s illness that I understood the importance of having proper estate planning documents. The more I learned, the more I realized there is a great deal of information most people (even attorneys) don’t know.

Before my father’s decline, he would mention from time to time about how to handle his affairs when he died. He also made it clear on many occasions that he did not want any artificial means to keep him alive. Knowing full well my mother would not be happy with his decision, I asked him to meet with a lawyer and put his wishes in writing.

As a result, he consulted with a seasoned estate planning attorney who drafted a last will and testament, revocable trust, health care power of attorney, financial power of attorney, and living will.

It is hard enough to care for someone with Alzheimer’s. It would have been impossible if we didn’t already have these documents in place. Because of my father’s planning, the financial, healthcare, and probate matters were handled seamlessly. It allowed us to focus on our father’s care.

Seeing first-hand how proper estate planning helped our family, I wanted to help others in a similar situation. After my father’s death, I changed my focus from finance to estate planning. I wanted to use what I learned from the front lines to benefit others.

I went into private law practice in Florida with a partner, whose father, incidentally, had terminal cancer. We lived the issues that many caregivers face. It was our mission to help caregivers understand how estate planning could help them. We especially reached out to those families in the “Sandwich Generation” who had young children they wanted to protect and who had real concerns about their aging parents.

Due to my husband’s career, we moved to California. I thought about starting another practice, but soon realized what I really wanted to do was educate others about estate planning.

I wrote Estate Planning for the Sandwich Generation: How to Help Your Parents and Protect Your Kids to be a resource for caregivers. There are ten steps for creating your own estate plan and five talks you should have with your parents. It is my mission to guide others through challenges of aging parents and caregiving.

Robert H. Schuller said, “Tough times never last, but tough people do.” It is my hope that this book with help people during those tough times.

About the Author

Catherine Hodder, Esq. is an estate planning attorney turned author. She enjoys working with families who would rather be doing anything other than estate planning. Her Florida law practice, featured in the Palm Beach Post, made “house calls” to help families with their estate planning needs. She now resides in California, writing helpful articles for members of the “Sandwich Generation.” She is also co-author of Law Office on a Laptop: How to Set Up Your Own Successful Mobile Law Practice, an #1 Amazon Kindle bestseller in law office education.

Connect with Catherine

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www.HodderInk.com

Facebook:sandgenlife

Twitter: sandgenlife

Instagram:sandgenlife

Pinterest: sandgenlife

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Meet Lisa Wingate, author of “Tending Roses”

Reprinted with permission from AlzAuthors.com

The Gap

By Lisa Wingate

In every story I write, there are bits of real life, nibblets of sheer invention and  sprinkles of serendipity. Readers often ask me which parts are which. Sometimes, it’s hard to dissect. Our way of looking at the world comes from our experiences in it. Our passions, the things we care about enough to examine, do as well. Continue reading

Welcome back, Wendy Mitchell, author of “Somebody I Used To Know”

By Wendy Mitchell

My name is Wendy Mitchell and I was diagnosed with Young Onset Dementia on the 31st July 2014. Who would have thought, on that day of diagnosis, over 3 years ago, that I would now be publishing a book, Somebody I Used to Know? But, on the other hand, why not?

When people hear the word dementia, they often think of the end stages. Well, it has to have a beginning and a middle and Continue reading

Meet author and blogger, Wendy Mitchell

By Wendy Mitchell

Wendy Mitchell at her home in York. 2015

Imagine yourself being given a diagnosis of Young Onset Dementia. Your life falls apart, you feel worthless, and of no use to anyone any more. Services are nonexistent, so you feel abandoned

That’s what happened to me in July 2014, when I was diagnosed with young onset dementia at the age of 58, and still working full-time in the NHS. I retired at the age of 59, due to ill health, thinking there was no alternative. Then I sat waiting for services to kick in, but, of course, nothing happened. There were no services.

I could have given up and gone into a deep state of depression, but I knew there must be more. We all had talents before a diagnosis of dementia; we don’t suddenly lose all those talents overnight when we get a diagnosis.

Opportunities started to come my way, first with research. That was once I’d gotten over the barrier of health care professionals thinking it was their right to deny me the option. Taking part in research gives me hope and I need hope. I could be helping create a better future for my daughters, so taking part in research was a no-brainer for me. Many people, when they hear the word ‘research’ have an image of men in white coats handing out dodgy drugs. That couldn’t be further from the truth. Social and technological research is equally important while we await that elusive cure. I’ve taken part in drugs trials, but also social research to find the best ways to live with dementia and care for those no longer able to care for themselves. I’ve tested apps, I’ve commented on web sites. Yes, me a person with dementia. After all, how do the so-called ‘experts’ know they’re getting it right if they don’t ask the real experts – those of us living with dementia now?

My blog, whichmeamitoday.wordpress.com is for me, simply “my memory.” I couldn’t tell you what I did yesterday unless I read my blog. That other people all over the world choose to read it is humbling, plus it’s enabled me to raise awareness. All I’m doing in my own little way is to show others what can be achieved and not to give up. I also hope it will help others look at dementia differently.

Oh, and I’ve just finished writing my book, Somebody I Used to Know, which is due out in the UK in the New Year and America in May, along with a little “firewalking” in October for my local Hospice.

So, as you can see, I’m a great believer in concentrating on what I still CAN do and not dwelling on the issues that dementia throws at me.

About the Author

I was diagnosed with Young Onset Dementia on the 31st July 2014 at the age of 58 years young. I might not have much of a short-term memory, but that’s one date I’ll never forget.

I have two daughters and live happily in Yorkshire.

Website/Blog: www.whichmeamitoday.wordpress.com

Twitter:  @WendyPMitchell

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Meet Peter Maeck, author of “Remembrance of Things Present”

0By Peter Maeck

The experience of writing a poem, play, or story, or creating a photograph, is like riding a train through wonderful, unexpected scenery. When I wake up in the morning I hurry to get to work because I never want to miss that train. My train derailed the morning of my father’s Alzheimer’s diagnosis. Dad hadn’t chosen a trip into dementia but here he was on track to forget his friends, his family, and even his own name. Dad told me to Continue reading

Meet Marita Golden, author of “The Wide Circumference of Love”

Golden, Marita CoverSilent Storm: What We Remember, What We Forget, What We Discover

A Novelist Meditates on Writing about Alzheimer’s

By Marita Golden

I didn’t choose. I was called. That’s how inspiration, art, and creativity work sometimes. I am often asked why I wrote a novel about Alzheimer’s disease.

I am not caring for anyone afflicted with it and no one in my family, from what I know, has ever been diagnosed with dementia or Alzheimer’s. So there was nothing in my life, my past or my then-present to explain the fictional expedition I launched. This is what happened: I was trapped inside the wrong story. I had written 100 pages of a novel that was going nowhere very fast. So I stopped, took a breath and gave the process over quite literally to a higher power. I was willing to “let it be.” Two weeks later I was writing the story of a wife who finds herself and the nature and meaning of love transformed as she cares for her husband who has been diagnosed with early Alzheimer’s disease. Sometimes as a writer you get called, summoned to dive in, to plunge into the terrifying beauty of a completely unknown narrative landscape. When you report for duty, that is when you know you are writer.

Four years later, after hearing the stories of those with Alzheimer’s, their caretakers, the professionals who care for them, the families who are burdened and sometimes buoyed by the demands of the disease, the researchers trying to find a cure, the was novel finished. I realized that I had started out as a novelist and ended up as not only a novelist, but an activist/advocate for greater awareness about the epidemic of Alzheimer’s in Black America.

I met adult children who found themselves stunned and incompetent in the face of a parent’s diminished capacity, and others who unflinchingly faced the disease and embraced their parent with the kind of transcendent love and loyalty of which they never knew themselves capable. I gave a 20-minute talk and reading about my life as writer before a group of residents of a memory care unit. They taught me to be here now, the value of the present moment and that they are indeed present, sensitive, intuitive. They remember the most important things–the meaning of human touch, an honest look in someone’s eyes, that a whole story can be told in a fleeting fragment of an iridescent memory of joy, and that words are often overrated.

But it was the statistics that turned me into an activist/advocate, that convinced me that maybe I was the right vessel to capture, contain and pour this story into the hearts and minds of readers. Statistics reveal a “silent storm” raging in the Black community. If Alzheimer’s is a crisis for America, it is an epidemic for Black America. African Americans are twice as likely as whites to develop the disease, are only three percent of those enrolled in trial to find a cure, and could be 40% of all those with Alzheimer’s by 2050.

Sometimes a story asks to be written and then asks to be used as a platform. My novel, The Wide Circumference of Love, about the Tate family, Gregory, Diane, Lauren and Sean is a story for everyone who has been alive long enough to hurt and heal, to feel coursing through their blood the strange strength borne of all we are sure we cannot bear.

All art is political, and social, and at its best engages in a frenzied dance with everything being thought and lived and denied and discovered swirling around it.

A story is never “just a story”. A book is never “just a book.”  A story, a book, can set the world on fire or give a writer, or a reader, something to believe in or fight for.

About the Author:

Golden, MaritaCo-founder and President Emeritus of the Zora Neale Hurston/ Richard Wright Foundation, Marita Golden is a veteran teacher of writing and an acclaimed award-winning author of over a dozen works of fiction and nonfiction. As a teacher of writing she has served as a member of the faculties of the MFA Graduate Creative Writing Programs at George Mason University and Virginia Commonwealth University and in the MA Creative Writing Program at John Hopkins University. She has taught writing workshops nationally and internationally to a variety of constituencies.

Her new novel is The Wide Circumference of Love.  Her other books include the novels, After and The Edge of Heaven and the memoirs Migrations of the Heart, Saving Our Sons and Don’t Play in the Sun: One Woman’s Journey Through the Color Complex. She is the recipient of many awards, including the Writers for Writers Award presented by Barnes & Noble and Poets and Writers and the Fiction Award for her novel After awarded by the Black Caucus of the American Library Association.

Her cover story for the Washington Post Sunday Magazine on African Americans and Alzheimer’s diease can be found here:

African Americans are more likely than whites to develop Alzheimer’s. Why?

Connect with Marita:

www.facebook.com/marita.golden

www.maritagolden.com

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Meet Philip D. Sloane, MD, author of “Alzheimer’s Medical Advisor: A Caregiver’s Guide”

The Alz Medical AdvisorBy Philip D. Sloane, MD

I was six years into my medical training – a second year resident in family medicine – when I saw the first patient who I now know had Alzheimer’s disease.  A middle-aged man brought her in, explaining that she was his mother and that the family was at wits end.  His mother didn’t seem sick, he explained, but she couldn’t remember “anything,” made poor decisions, and would wander off and get lost if left alone.  In the examining room, she wouldn’t sit down.  From my limited Continue reading

Meet Niki Kapsambelis author of “The Inheritance”

The Inheritance book cover FINALBy Niki Kapsambelis

On a drizzly April day in 2009, I walked into a hotel suite in downtown Pittsburgh to meet members of a North Dakota family stricken with a rare genetic mutation that guarantees early-onset Alzheimer’s disease.

My life changed profoundly that day. Up to that point, I knew precious little about Alzheimer’s. I was a journalist on assignment for the University of Pittsburgh, whose Alzheimer’s Disease Research Center had been studying the
DeMoe family for a few years. I was stunned by the magnitude Continue reading

Meet Candy Abbott, author of “I’ve Never Loved Him More”

9781938796081 COVER - Front RGBBy Candy Abbott

A Husband’s Alzheimer’s, A Wife’s Devotion

“Mom,” my daughter Kim said, “You know you’re going to have to write a book about how you’re dealing with Dad.”

I recoiled at the thought. It was all I could do to get through each day of unknowns and added responsibilities. “No, hon. I have to live this before I can write about it. I have no energy to think about ministering to others right now. Maybe after it’s all over—maybe then, I could think about writing—but not while I’m dealing with all this raw emotion. I’m still finding my way.” Continue reading