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.
I never dreamed I’d have to give up my television career when I was thrust into caring for my challenging father and sweet mother. The experience was incredibly heart-wrenching, but once I finally figured everything out medically, behaviorally, socially, legally, financially, and emotionally, I became obsessed with writing my first book “Elder Rage” (with humor to make it palatable), and a passion to help others avoid the pitfalls I so unnecessarily experienced.
For eleven years, I pleaded with my obstinate elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, “Jacqueline, I just can't work with your father. His temper is impossible to handle and he’s not going to accept help until he's on his knees himself.”
When my father’s inability to continue to care for my mother nearly resulted in her death, I immediately flew from Los Angeles to San Francisco to step in, despite his loud protests. It was so awful to have my once adoring father be so loving one minute and then call me horrible names and throw me out of the house when some trivial little thing set him off. I took him to several doctors and even a psychiatrist, only to be flabbergasted he could act so charming when he needed to.
Finally I stumbled upon a thorough neurologist who specialized in dementia, and put my parents through a battery of blood, neurological, memory tests, and PET scans. After ruling out numerous reversible forms of dementia and evaluating their many medications, he shocked me with a diagnosis of Alzheimer's in both of my parents – something all their other doctors missed entirely!
I realized I’d been coping with a disease that appears to come and go, and that my father was trapped in his own bad behavior of a lifetime of yelling to get his way, which was coming out in intermittent over-the-top irrationality. I learned that demented does not mean dumb (a concept not widely appreciated), and he was still socially adjusted never to show his Mr. Hyde side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.
It is quite a roller coaster ride how everything finally got worked out, but it also led me to the motto I have shared ever since: When life takes you to your knees and nearly destroys you, search for the Silver Lining because those hardships may also lead you to your highest purpose, passion and reward.
Since I had never written anything but a postcard and self-published, I am honored “Elder Rage” became a Book-of-the-Month Club selection, a caregiving book first. It received 50+ endorsements and 550+ 5-Star Amazon reviews, became required reading at numerous universities, and was considered for a film. It’s in print, audio, eBook, and autographed via PayPal.
Soon I was invited to speak at conferences and I adored being able to personally help so many caregivers. Eventually I became an international speaker on Alzheimer’s, and then a few years later unfortunately a speaker about my own invasive Breast Cancer. I also discuss Caregiver Stress and Illness, Elder Abuse, and Alzheimer’s Termed Type 3 Diabetes. To book a speaking engagement visit my website.
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.”
AlzAuthors is built by caregivers for caregivers, with a mission to provide carefully vetted books and blogs to help you find the answers and guidance you need. The majority of our authors have "walked the walk" with a parent, spouse, or other loved one, and have chosen to write their stories as balm for the soul and to share with others the information they wished they'd had on their dementia journeys.
November is National Caregiver Appreciation Month. What a wonderful time to recognize the long hours, sacrifice, and love all caregivers bring to the task of caring for a loved one with dementia or any long-term illness. In honor of their efforts, AlzAuthors is hosting a book sale and giveaway. This is a terrific way for caregivers who are looking for knowledge, guidance, and support to build a library of carefully vetted books to help guide and inspire them every day.
Starting today through November 13th, you can take advantage of this excellent opportunity to check out some of our books at reduced prices. We offer books in a variety of genres, including fiction, memoir, non-fiction, and children’s literature. All are available in Kindle, and many are available in other digital formats, paperback, and audio.
Our books are written from a deep place of understanding, experience, knowledge, and love. May you find one – or two, or more! – to help guide you on your own dementia journey.
Click on the book covers to visit each book’s Amazon.com page. Please check all prices before purchasing. AlzAuthors is not responsible for ensuring price reductions. Please contact the individual authors with questions (contact information is provided in each author's AlzAuthors blog post). All prices are in U.S. dollars.
In the early days of the disease, when I heard stories of
others in later stages, I actually thought… "Well, I know that will never
happen." Little did I know what the future held; I was very naïve. Many
times along the way, I would remember something a friend had shared with me two
or three years prior, and reality would settle in. We were there; those things
were happening. It was hard, no doubt, but at least I knew others had been down
As we journeyed through Alzheimer's with Mom and Dad, I regularly
took notes, sent emails to our kids, took pictures…that sort of thing.
Somewhere along the way, I decided that one day I could write a book with all
the notes I was taking. I had become passionate about sharing the story and
encouraging others, and I wanted to share our journey with people who needed to
hear about it.
My reasons for telling the story are:
1.) To help others beginning the journey – to share information
that may be helpful to them, even if it is hard to tell…and hard to hear.
2.) To make it clear to those who don’t understand what Alz
is…it is a cruel disease of the brain affecting 5.7 million Americans.
According to the Alzheimer's Association, that number could rise to 14 million
3.) To share a sweet story of two people who loved each other to
the end. Their journey made it possible for others to witness a true, one-of-a
kind love story and raised the bar for many.
It's not an easy story to tell, but the truth is –
Alzheimer's is not easy. If I didn't tell the real story, even the parts that
make us uncomfortable, then I'm not sure any of my three goals would be
accomplished. I have struggled…hoping others don't think I shared too many
intimate details, but mostly praying that Mom and Dad would approve. Now, I
know that if they could hear the stories about how their journey is helping
others, they would be pleased.
I'm pleased to announce my latest story "Christmas at Blue Hydrangeas" is now available in the Amazon store for Kindle.
C@BH, as I like to call it, is the prequel to "Blue Hydrangeas, an Alzheimer's love story." So many readers said they were enchanted with Jack and Sara and their bed and breakfast that I was inspired to write more stories about the Harmon's and their welcoming home.
It’s Christmas Eve, and while Sara waits for Jack and their son David to arrive home to Blue Hydrangeas, their Cape Cod bed and breakfast, a blizzard threatens to close the bridges, stranding all travelers to and from the Cape. As she prepares for the holiday, a few unexpected visitors arrive at the inn, all sharing the common bond of grief. Sara is determined the storm and sadness will not spoil Christmas, and that Santa will find his way to two fatherless children far from home. A sweet slice-of-life story about loved ones and strangers coming together to share the spirit of Christmas.
I must admit it took me a very long time to write this story, which consumes all of 49 pages. Many obstacles got in my way: My chronic repetitive strain issues which prohibit writing on a regular schedule, and caregiving for my mother and stepfather, which came to its own natural end. Perfectionism also held me up because I wanted this story to be as special as "Blue Hydrangeas," to be "beautiful," as so many readers said it was. I hope I have succeeded.
I love the short story form. It's a challenge to include all the details of the plotline and qualities of the characters and tie it up tight in a few pages, which may also be a reason that it took almost two years to complete this one. My last book, "Swim Season," weighs in at two 2 pounds, 593 pages and took five years to write. Hopefully I'll get a little faster in 2019.