AlzAuthors: Blogger Jack Fussell, Fighting Alzheimer's One Step at a Time

by Jack Fussell

On January 12th, 2013 I left Skidaway Island State Park near Savannah Georgia.  I traveled westward to Monterey, California. 2,594 miles were on foot pushing a jogging stroller.  458 miles were in a car. The reason I did this was to raise awareness concerning Alzheimer's disease and raise money for the Alzheimer’s Association.

My dad passed away on June 30th of 2000. I was holding his hand. He died with Alzheimer's disease. Prior to that, prostate cancer had taken a huge toll on both his physical and his mental health. He was a veteran of World War II and witnessed a lot of injury and death. He was a great father. He taught my brother and I how to fish and how to play baseball. He loved making us laugh. 

My relationship with Dad had been strained prior to his sickness (my fault). Immediately following his passing, I realized the pettiness that kept me away from time to time. Shortly after his death, I almost lost my life to a bleeding ulcer. While in ICU, I said a prayer, asking God to let me get out of the hospital alive, and promising in return that I would help as many folks as I could until I could no longer breathe. I was in bad shape, both physically and emotionally.

AlzAuthors: Harriet Hodgson and The Caregiver Series

By Harriet Hodgson

If you told me I would write a series for family caregivers, I would reply, “Thanks, but I think you’re delusional.” I would say this gently and go on my way. Although I’ve written about my caregiving experiences, I never thought of writing a series. This is odd because I’ve cared for three generations of family members.

My mother had a series of mini strokes and, according to her doctor, they added up to Alzheimer’s. I was her family caregiver for nine years and didn’t realize how exhausted I was until she died. A few years later, I became my twin grandchildren’s guardian and caregiver.

AlzAuthors: Gela-Marie Williams, author of Green Vanilla Tea

By Gela-Marie Williams

I remember the evening my youngest son came to me in my bedroom holding a rather dog-eared manuscript of Green Vanilla Tea. I had worked on this family story with my two boys over a few years. I’m not sure how many, exactly. We simply worked on it until we’d tussled with it enough and one day it was done. My son leaned against the doorframe, favouring one leg as his dad would have done. I remember noticing how much space he took up in the doorway. No longer the boy he was when this story all began, but a strapping 19-year-old. He was the age I was when I met my husband, the man readers would later get to know as Dominic. I thought he might ask what was for dinner. Like most teenagers, he was perpetually hungry and ate more than I thought humanly possible. But he said,

“Thanks Mom, I think this will be the most powerful story I’ll be able to share with my life partner one day.”

I leaned back against my pillows and thought, Wow, we did it; my job is done.

The manuscript my son held in his arms is a story I wrote that followed our family journey though Dominic’s illness with Younger Onset Dementia and ALS/MND. Dom died in 2007 aged 45. There is heartache and there is humour. But at its core, Green Vanilla Tea is a love story. A story of love and life in a world where so much was amiss, written as an offering of hope to my two [then] teenage sons.

My writing started out as a spontaneous, creative response to grief, with no thoughts of placing this part of our life on display. Amidst the demands of caring for Dom and parenting my sons, writing kept me anchored. It held still the paradox, where life was both empty and full, together and falling apart and the simplest things were the most extraordinary. I wrote of love and loss and finding hope in inexplicable times.

After Dom died, I collated my musings together for the boys. Dementia in a young person is a slippery beast. So much of what they experienced felt invisible and without words. They asked me to write our story. To “try and capture it somehow” and “give it form.” We had no intention to publish. It was enough that my writing provided a wonderful launching pad for rich conversations with my sons.

AlzAuthors: Cynthia Toney, author of 10 Steps to Girlfriend Status

By Cynthia Toney

Alzheimer’s is a cruel prison that held my dear mother-in-law in chains for approximately three years, taking her freedom and her mind until it finally took her body. I understood little about the disease before watching a once brilliant, witty, and loving lady wither before my eyes.

I was shocked by how quickly my mother-in-law forgot how to communicate with me and then forgot who I was. We’d had so many interests in common that our conversations had always been easy. I missed her intelligence and laughter, and she no longer spoke the customary “I love you” in parting. But if I was saddened and worried by her condition, my husband and his brother were devastated. They had to learn to manage the life of the matriarch who’d always done the managing for our family and had handled it as well as she had her jobs as a bank vice-president and a high-level position in state government.

The emotional toll that this reversal of fortune for her had on the rest of us needed to be fully expressed. I decided to write about Alzheimer’s and its effects on both victim and family by using one of the characters in my fiction series for teen girls.

Mrs. Villaturo first appears in book one, 8 Notes to a Nobody. She is the healthy, elderly next-door neighbor of my main character, Wendy, who is a young teenager. Mrs. V (as Wendy calls her) becomes a surrogate grandmother to the girl, who grows to love her neighbor. In book two, 10 Steps to Girlfriend Status, Wendy is in high school, is forming a romantic relationship, and is becoming part of a blended family. During the changes all this brings, she discovers something wrong with her beloved Mrs. V.

AlzAuthors: Marie Marley, author of Come Back Early Today - A Memoir of Love, Alzheimer’s and Joy

By Marie Marley

I took care of my beloved Romanian 30-year life partner when he developed Alzheimer’s. The disease began very slowly, and for the longest time I just couldn’t understand the changes he’d been displaying. He’d become short-tempered, often confused and sometimes unusually forgetful.

Then one night he was found driving on the wrong side of the road. Realizing what he’d done, he pulled over and stopped. A wonderful lady pulled up behind him and asked if he needed help. Seeing his bewilderment, she gave him a ride home, and he told her to call me. That’s when I began to wonder if he might be getting Alzheimer’s.

I took care of him for four years. When he could no longer live safely at home, I was regretfully forced to place him in a nursing home. It was an excellent facility dedicated exclusively to the care of people with Alzheimer’s and other dementias.

He lived there for nearly three years before passing away. During that time, I often couldn’t reach him. Then one day I was in Walgreen’s and saw an aisle with stuffed animals. With great hesitation, I decided to buy him one. It was a tiny chick that peeped when you pushed a button on its chest. I was afraid my brilliant former lawyer and subsequent professor of French would be insulted that I’d taken him a child’s toy.

Quite to the contrary, he loved it, and immediately began caressing and kissing it. He named it “The Little Yellow One.” Then we began playing little games with it. We laughed like a mother playing with her small child. After that I took him more stuffed animals. He loved each more than the one before. I realized I’d made him magnificently happy. What’s more, I’d discovered a way to interact with him that was meaningful to us both.