From the AlzAuthors Blog: Alzheimer's and Dementia Caregiving Stories Vol. 1

AlzAuthors, the global community of authors writing about Alzheimer's and other dementias, is pleased to announce the publication of Alzheimer's and Dementia Caregiving Stories: 58 Authors Share their Inspiring Personal Experiences, Vol. 1. This poignant collection of stories grew out of the first year’s blog posts on AlzAuthors.com, from June 1, 2016 through May 31, 2017. Within its pages, you will be immersed in a world of writing about Alzheimer's and dementia.

The contributing authors have all been touched by Alzheimer’s and dementia, whether they live with the disease, are caregivers, or simply care. They reveal the story behind their books, what made them sit down and painstakingly share their story, and what they have gained from doing so.

This year-long project was made possible through the collaboration of seven women, all daughters of dementia. We have worked tirelessly to find and vet resources – memoir, novels, nonfiction, poetry, children's books, and blogs – to provide those living with dementia a friendly place to find the support and knowledge they need. We believe that by sharing our stories we open a dialogue that not only reduces the stigma surrounding a dementia diagnosis, but enlightens others to the reality that “I made it through. You can too.”

From the AlzAuthors Blog: Meet Minna Packer, Blogger, Artist, and Filmmaker Living with Early-Onset Alzheimer's

By Minna Packer

I was a teacher, professor, artist, filmmaker, mother of two adult children, a wife, a former American Fulbright, and an active member of my community. I am now 63. I was diagnosed twice, first in September 2016 with a Spect scan, then again in January 2017, when another neurologist ordered an FDG Pet scan. Twice I was told the pattern of the images was that of Alzheimer's. The changes and symptoms of what appears to me to be a rapid form of the disease have been radical.

The neurologist recommended I retire. I pushed myself to continue through the term, and then resigned from my twenty year teaching career last summer. There was no recognition for my many years of service. People I had known for decades, friends and colleagues, disappeared.

From the AlzAuthors Blog: Alzheimer's Advocate Brian Kursonis

 

By Ann Campanella



Brian Kursonis, who has early-onset Alzheimer’s, and I met for the first time back in April. He showed up at the memory care facility where I was doing a reading from Motherhood: Lost and Found, a memoir about my mother’s descent into Alzheimer’s. He had reached out to me a few months earlier after seeing some posts on social media about my mother’s illness.

Brian had attempted to meet me at two earlier book signing events. The first one came and went because, well, he forgot about it. The second one, there was some confusion about which Barnes & Noble I would be at, so we ended up missing each other.

The third time was the charm. When Brian walked into the dining room of the memory care facility, I recognized him immediately from photos I'd seen on Facebook and Twitter. I asked him to join our group that had gathered around a long table. I was struck by Brian’s kind smile, his intelligence and wisdom and the fact that he and I were almost the same age.

 At the time, Brian was 55 and I was 56. We connected instantly, perhaps because I had experienced 14 years of my mother's Alzheimer's, and he was at the beginning of his journey. According to research studies, he may only live 8 to 12 more years, and his cognitive function will likely decline within 2 to 4 years.

During the reading, I asked Brian tentatively if he was comfortable talking about his condition. He cleared his throat and said, “Sure. I’d be happy to.”

AlzAuthors: Emily Page and The Fractured Elephant - Because Demented People Need Love Too

By Emily Page

Writing about dementia came about fairly slowly and organically. I'm an artist, so when my dad was diagnosed with frontotemporal dementia at the age of 65, my natural inclination was to start doing paintings about our journey as a sort of self-prescribed art therapy. I used an elephant as both a symbol for and a talisman against dementia, because "an elephant never forgets." As I created paintings, I posted them on social media with an explanation of their meaning, and people really responded to them. At the insistence of a friend, I started a blog to help promote my artwork, and it became a kind of online journal. Before long, I was getting tons of great feedback from my readers when I posted about what we were experiencing as we coped with caregiving. "Me, too!" was a phrase I started hearing a lot.

AlzAuthors: Judy Cornish and The Dementia Handbook

By Judy Cornish

Seven years ago I left my law practice in Portland, Oregon, in search of a small town where I could semi-retire and practice elder law. I found the community I was looking for in Moscow, Idaho, but not retirement. Instead, I’m now the owner of two businesses, an author, and the creator of the DAWN Method, a unique approach to dementia care that helps families keep their loved ones at home with more comfort and less stress. It all began with a courageous, sweet, white-haired woman who lived across the street from me.

She lived alone, with no children nearby, and had been diagnosed with Alzheimer’s several years earlier. When her family said they were moving her into a care facility because she could no longer drive, I volunteered to help her stay on at home. Within a few months, I was helping so many neighbors it became necessary to hire staff. Palouse Dementia Care was born.

From the start, my goal was simple: I wanted to help her—and each of my new clients--continue to live where they wished to live, with dignity and autonomy. My training, however, was not in medicine or social work. I was a lawyer with a classical education.

AlzAuthors: Paul Hornback's Devotional Book for Alzheimer's

By Paul M. Hornback

I’ve been living with early onset Alzheimer’s disease for over seven years. Soon after my diagnosis, God kindled within me a deep desire to do something positive for people who were struggling with this disease. I wanted to help them maintain their faith as they face the challenges of living with early to mid-stage dementia.

My faith has always been strong and God has blessed me in so many ways. After my diagnosis, I knew God still had a plan for my life and would continue to allow His grace to flow through me. His grace enabled me to write words of encouragement for people struggling with dementia.

I have always loved reading devotions, so it seemed natural to start writing devotions centered on living with Alzheimer’s. As I started writing, God seemed to guide my thoughts and my hands as I typed devotions filled with encouragement, peace, contentment, joy, hope, and faith.

AlzAuthors: Tracey Shorthouse Tells Her Alzheimer's Story Through Poetry

By Tracey Shorthouse

When I was first  diagnosed  with early onset Alzheimer’s Disease and Posterior Cortical Atrophy in 2015, I wanted something to focus on. All my life I have helped others through being a nurse, and I still wanted to do that. 

The brain needs stimulation to keep going, so after the initial shock at being diagnosed and the relief that it wasn’t MS as what I first thought and feared, I took stock of what I could still do, and if I couldn’t do something I persevered until I relearned old skills. I had an occupational therapist who used to come and see me, and she got me in touch with groups that promote positivity in dementia. So I joined The SUNshiners, a network for people with a diagnosis of dementia living in Dover Deal and Shepway, Kent, UK.  I also attend meetings for the Dementia Action Alliance when I can, and get involved with other things, like talks. 

I talk to post diagnostic groups - people who have recently been diagnosed with dementia - and the public to bring awareness that dementia can affect all ages, not just the elderly. Last May, I gave a talk to the local police. I also go to a creative, inspired writing group weekly. I started writing a blog on Facebook,  as a way to keep a journal and to help others in the process. 

I started writing short stories at first to keep my brain active, but I found them too complex to carry on. So instead I started to write poetry. At first it was cathartic to write about my dementia and get it out of my system, but I didn’t want to focus on it as dementia is only a part of who I am. It doesn’t define me. So I wrote about nature, life, and then  stories that came into my head as poems.

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: Susan Suchan - Advocate, Writer, Voice of Dementia

By Susan Suchan

When I look at the faces of my grandchildren and see the joy and blessing that they and my family and friends bring to me, I am determined to share this dementia experience! They love me just the way I am.  What may at times look or sound silly, different or even disturbing, is explained and discussed, so we all work together, bringing mutual joy and learned compassion for the best quality of life, for everyone involved.

When I was first diagnosed with FTD/PPA (Frontotemporal Dementia/Primary Progressive Aphasia), I was scared by what I read that was written by scholars about the outlook or prognosis of this disease. No treatment, no cure, and possibly living in a Memory Care Unit. I desperately wanted to hear from someone actually living with the disease and how they were managing. I found those people in a secret Facebook group, the AFTD (Association for Frontotemporal Degeneration), the Dementia Mentors web page, and even the Alzheimer's Association. I was validated! I mourned the diagnosis and then quickly realized that I wasn't going to die in the near future. I set out to share my experience, so that others would have access to that same validation and assurance I had found. Fear is immobilizing.

Writing and speaking publicly gives me a purpose, as well as helping to break the stigma that all dementia is not Alzheimer's. Writing and speaking also educates those unfamiliar with dementia and opens conversations. I am always touched when others respond with questions, new ideas, understanding and compassion. I am reminded that living with a diagnosis of dementia is different for each individual, but carries many similarities. I have come to learn that it takes a village to maneuver the experience of dementia.