From the AlzAuthors Blog: Meet Blogger Liza Nelson in "Alice in Memoryland"

By Liza Nelson

Before my husband was diagnosed, I had never heard of MCI. Before my husband was diagnosed, we teased each other about our failing memories. Yes, he was weirdly forgetful, but I was worse at names--speaking of which, on my blog Alice in Memoryland I have changed our names to Alice and Ralph at the request of my husband, a private man. He is a man with a sense of humor, a fondness for “The Honeymooners,” and a not infrequent desire to send me to the moon.

In the two years before my husband was diagnosed, as his memory and mood deteriorated, our joking with each other dried up. I was increasingly scared and embarrassed for my husband, more often angry with him. Our long marriage had been passionate, but often out of kilter as our two strong personalities engaged and clashed and re-engaged. Then, in our late fifties/early sixties, we seemed to have found a happy equilibrium and began enjoying our marriage in earnest. Now here was Ralph ruining everything with what I saw as his inattention and disinterest in me and our lives.

Then came the diagnosis: MCI verging on Early Alzheimer’s. It has frankly been a relief to have a name for the still subtle but profound transformation in Ralph’s mental process affecting his behavior and our relationship. For the last five years, since a spinal tap showed the plaque build-up that predicts Alzheimer’s, the changes have been incremental but profound as we wait for his condition to slide into full blown Alzheimer’s, a disease that will strike more and more couples in the next decades.

Every case of memory loss or dementia, or any irreversible illness for that matter, is different. I cannot speak for anyone else going through the early stages of memory loss with a spouse. But having read other blogs and several books, I wanted to do something slightly different in sharing our experience. Starting from the beginning of Ralph and my journey down the memory rabbit hole, I have tried to use both key moments and the smallest details of our life to explore my own reactions, as a caregiver and also as a woman and a wife. After all, marriage is a relationship based on choice and commitment, not to mention the emotions and intimacy of love that poets and philosophers still struggle to understand.

Although I have published in the past as a novelist, poet and journalist, writing the truth about my past and present life with Ralph has been an enormous challenge. While I write about the moments of joy—and those moments do still happen—I also write frankly about my darker moments and feeling. I am frequently afraid that I am going to disgust readers in exposing my selfishness, my lack of patience, my resentments, and sometimes my fury. Instead, whenever I think I may have gone too far, readers respond with enormous support. They seem to appreciate putting a truth they recognize into words, however unpretty it may be.

It’s an incredibly lonely business caring for someone on the Alzheimer’s spectrum. I am so glad I have found a community in which I can speak my truth and be heard, that in helping others I have found help in return.

About the Author

Liza Nelson, who writes her blog Alice in Memoryland  under the name Alice Cramdon, is the author of the novel Playing Botticelli and co-author of the James Beard nominated The Book of Feasts. She has worked as a journalist, dramaturge, real estate manager, wife and mother. She lives on a farm outside Newnan, Georgia.

Connect with Liza

Facebook

Author web page

Twitter: @LizaNelson1

@AliceMemoryLand

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AlzAuthors: Candy Abbott - I’ve Never Loved Him More: A Husband’s Alzheimer’s, A Wife’s Devotion

By Candy Abbott

“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.”

AlzAuthors: Susan Kiser Scarff and Ann Kiser Zultner, authors of Dementia: The Journey Ahead - A Practical Guide for In-Home Caregivers

by Susan Kiser Scarff

Within a year of my husband receiving his dementia diagnosis, I had a classic case of caregiver burnout. I couldn't concentrate at work and most of my time was taken up with worrying about my husband's uncharacteristic and impulsive behavior. I was petrified and intimidated about the future…overwhelmed with basic day-to-day activities. Further, I was apprehensive about making the transition from wife to protector, nurse, and mother.

At the suggestion of a health professional, I began documenting the daily struggles of caregiving. After my husband passed away, I realized my daily journaling could be modified and turned into a valuable and timely resource for other caregivers in similar situations. Writing the book, and in turn helping others in similar situations, helped me to feel that my husband’s illness and my own caregiving struggles were not in vain. Something positive was able to come from the horrific disease called Dementia. Hopefully, the book, written with the help of my sister, Ann Kiser Zultner, will help fill in the huge gap between medical and in-home care for dementia patients.

AlzAuthors: Karenna Wright and her memoir, "The Grapes of Dementia"

by Karenna Wright

It used to be that nine months or so after a traditional wedding, couples would announce they were pregnant. Not with Alan and me.

Nine months after we were married, and before our first honeymoon year was over, we were instead adjusting to the symptoms of Alan’s newly diagnosed dementia.

He passed less than five years after that diagnosis. He was 67 years old, I was 59.

Since then, I've been writing about our lives with early onset dementia, as well as my grief process.

I'd been writing all my life, had published in journals and magazines, so the thought of writing our story came naturally to me. And really, it wasn't an idea at all. It was something I did as instinctively as a mother loves her child.

At first I randomly jotted down brief notes, a shorthand to capture all my memories.

Several years later, Alan fell at home, then had a bad reaction to an anti-anxiety drug given him in the hospital.

He suffered disorienting, disturbing hallucinations and excruciatingly painful muscle spasms. Under the influence of the drug, he clawed at me, grabbed me, pulled me close to him, and fought me off—all at the same time. He squeezed my hand so tight I thought it would break.

When I got home at eleven o'clock that night, physically beat up and emotionally broken, I wrote down everything that happened that day.

My writing was raw, uncensored. I wrote for my own mental health. I needed to share my agony, to find a glimmer of hope in it, then offer it to others.

It's Alzheimer's & Brain Awareness Month. Why Did I Write a Book About Alzheimer's?

From my early days as a nurse I’ve had a soft spot for dementia patients. Most people are unfamiliar with the day to day pain and loss this disease brings. Blue Hydrangeas, an Alzheimer’s love story is my attempt to tell the heartbreaking story of dementia, and to honor the more than 5.4 million Americans living with Alzheimer’s and the people who love and care for them.

One day at work as a nurse case manager in a rehabilitation unit, I met an elderly couple who inspired my characters Jack and Sara. She had Alzheimer’s, and he was physically frail. The amazing thing about them was that they’d driven from Florida to New York by themselves without any incident. Unfortunately, once home she fell and broke her pelvis and landed in the hospital. That’s where I came in, to assist with the discharge plan. She was supposed to go to a local nursing home for continued rehab and her son planned to drive her and her husband there on discharge day. I completed their plans and said goodbye, but couldn’t stop thinking about them, wondering what would happen if they somehow left the hospital without their son and did not go to the rehab. Where would they go? What would they do? My wild imagination took off, and the seeds for the novel took root.

The response from readers is both satisfying and humbling. When I published I had no idea if the book would find an audience, but within weeks I’d received several 5-star reviews from caregivers who thanked me for writing “their” story. A later reviewer called it “healing,” and another said it was “grief release.” A favorite comment is “Read it twice just to make sure I didn’t miss anything.” I could not have hoped for a better response.

As a nurse, I’m proud to help others dealing with this disease. As an author, I’m grateful this important topic found me, and that I had the determination and fortitude to bring this book to completion.

Knowing that I have not only touched lives but validated the experiences of these unsung heroes is one of the greatest accomplishments of my life.

Preview Blue Hydrangeas on Amazon