Posted: December 2, 2017 Filed under: Alzheimer's, caregiving, Family, Florida, Health, Writing | Tags: Alzheimer's, appreciation, caregiving, friends, gifts, God, gratitude, grief, health, joy, lessons, love, narrative, renewal, transitions, trust, truth, vulnerability, writing
Jean Lee, Vicki Tapia and I meet after living through our parents’ Alzheimer’s.
It occurred to me after posting the umpteenth photo from my trip to Florida why I feel the need to share my joy over and over again. I forget that some of my current friends didn’t know me when my mother had Alzheimer’s. So, I’ll share a little backstory.
I was in my early 30s when Mom first showed signs of the disease. It felt like my legs were cut out from under me. I had no clue how to handle a mother who was slowly spiraling into confusion. Add to that the fact that I had a series of miscarriages at the same time. These things made me question everything in my life.
I had some wonderful friends back then who are still in my life. But there were many more acquaintances who had no idea what I was going through. When they asked a simple question such as, “How’s it going?” I couldn’t tell the truth.
Actually, I did tell the truth once or twice. But it quickly became apparent that what I was saying was so far from their reality that they didn’t understand or, for whatever reason, weren’t able to enter into it with me. And I rarely had the courage to open the door to my own vulnerability.
Excuse me if I offend anyone, but it was hell. Hell to watch my mother, who had been the foundation of my life, lose the footing in hers. She gradually lost track of so many things – the day and time, where she was, whether to eat or drink, how to fill the hours. Her face fell when I corrected her, tried to bring her back to familiar patterns of living. She believed friends were having parties without her, that my father was stealing her money, that people were plotting against her. One day she looked into my eyes and didn’t know who I was.
My mother was a kind, intelligent woman with a heart of gold. She was aware of people’s feelings and she always tried to comfort those who were hurting. Mom deserved to have her story told. To have people understand the nightmare she was living through. Yet, I couldn’t share her story or mine over and over without making people uncomfortable. Or maybe I was the one who was uncomfortable.
Either way, it made for a lonely time. My husband and my siblings understood, and I was so thankful for them. My writing groups welcomed me, and I poured out chapters of my memoir to them on a weekly basis. My horse friends helped me care for Crimson while I was away.
I know I should be thankful because I had more support than many people do. But I could have used a daily confidante, or two or three. Friends who could listen to the details of my life — what felt like a train wreck — and offer some perspective or simply smile or sigh and say, “Yes, it’s awful.”
So many of my peers were busy raising children or enjoying time with their spouses or doing whatever it appeared like people did when they seemed to be happy and not living through the same losses I was.
That loneliness brought me to my knees. Literally. And I cried out to God. Amazingly, He brought people into my life and transformed other relationships. It wasn’t quick a fix. But a slow, deep one. I grappled with the ache of loss – my mother, my miscarriages, my dreams of what I thought my life should be – on a regular basis. But I was given what I needed to make it through each day.
Now, with the perspective of 20+ years, I see the abundance in my life, the incredible gifts of old friends and new ones. I am no longer alone, nor the only one whose mother had Alzheimer’s. So, as I share photos and stories of friends and support along my journey, I do it with a grateful heart and a prayer that others who feel lost in their solitary world of caregiving will know there is hope.
Click here to learn more about my memoir, Motherhood: Lost and Found.
Posted: November 28, 2017 Filed under: Alzheimer's, Books, Family, Florida, Health, nature, Writing | Tags: adventure, Alzheimer's, appreciation, beauty, Books, dawn, family, friends, fun, gifts, gratitude, grief, health, home, joy, lessons, love, narrative, nature, preparations, renewal, serenity, sunset, transitions, travel, trust, walks, writing
(This is a four-part series. Click here to read Part I.)
After packing and saying our goodbyes to Jean and Vicki, Gilda and I drove south towards Alligator Alley. I was excited to be driving across Florida and to get a view of the everglades. My father, a civil engineer for the Army, had worked throughout South Florida on various projects before I was born. The names of towns were familiar to me because I had grown up listening to him talk about them.
Alligator Alley: on the side of the road.
While I felt as if I were home and had hopes of catching a glimpse of an alligator, Gilda’s husband Stu had warned her not to get out of the car because he’d been warned there were large snakes in the area. Gilda wasn’t sure what to do when I pulled over and asked her to take a photo of me by the water. But she did! Then I took one of her. Just don’t tell Stu, she said. And we laughed.
We arrived in Miami in one piece and were struck by the change in scenery…busy highways, hotels, so many Spanish-speaking people. Our time in Miami was filled to the brim with non-stop activity. But a few things stand out in my mind.
The Friday night Meet and Greet was busy and loud after our quiet time at the beach in Naples. Authors were invited to leave copies of their books and business cards on the hotel counter. By the time Gilda and I arrived, there were so many books and cards, we had to squeeze ours in.
We met Laura and her sister Christina at the bar. They waved us over and introduced us to authors they had met. We talked for a bit, shouting over the noise. I’m always struck by Laura’s beauty and vivaciousness and enjoyed watching her interact. She’s a natural publicist, always sharing warm words about her authors and listening intently to the stories of others.
After the social hour, we were ushered into a large room where several presenters gave talks. The room was so full, we had to split up in order to find seats. After two presentations, Gilda and I stepped out to look for Laura and Christina. We found them in the hotel lobby and ended up pulling up chairs and spending the rest of the evening in this less busy setting.
Around the table, the four of us shared pieces of our lives and got to know each other. I couldn’t help but think how it was as if the conversation that had started in Naples was continuing. My mother, who loved stories and intimate connections, was surely smiling down on us all.
Gilda and I walking through the Miami Book Fair. Laura took the photo.
The next day, Laura, Gilda and I met in the lobby, so that we could ride the shuttle to the Miami Book Fare. It was a gorgeous day in South Florida with partly cloudy skies and temperatures in the mid seventies. Our plan was to find the Readers’ Favorite booth, take photos of our books and then just walk around and enjoy the scene.
Gilda with My Father’s Daughter: From Rome to Sicily
Laura with Live the Life of Your Dreams: 33 Tips to Inspired Living
Me with Motherhood: Lost and Found
The Miami Book Fair is recognized as the finest literary book fair in America. I’ve never been to a street fair that was made up of so many booths of books. It lasts for eight days and is a veritable feast for a writer. More than 250 publishers exhibit and sell books and over 450 authors read and discuss their work. Everywhere we turned we found something to marvel at!
The four hours we had planned to spend at the book fair evaporated like water on a hot sidewalk. And before we knew it we were back on the shuttle to the hotel. But we had each had a sweet taste of this special festival and even had the opportunity to celebrate with other authors and meet Mitch Kaplan, co-founder of the Miami Book Fair.
Hamming it up with some of our new author friends.
There was just time to touch base with Laura’s sister by the pool, then run out to pick up some gluten-free, dairy-free food for Gilda and me before we had to get ready for the main event, the Readers’ Favorite Award Ceremony.
We had heard the event was formal. But it wasn’t until I saw a few women dressed in ball gowns and sparkly, sequined outfits that I truly took that in. Gilda and I were impressed with how the event was set up with rows of white, cloth-covered chairs, a stage and photo area with a Readers’ Favorite backdrop, a bar at the back of the room, and two side areas where a buffet dinner would be laid out. If you had a good imagination, you could pretend you were in Hollywood.
The Readers’ Favorite Award Ceremony
Gilda and I joined Laura and Christina in an area to the side of the stage. The host told Laura it was prime seating because you could see well and make an early escape if you didn’t want to stay through all the awards. It turned out to be perfect.
After a short introduction, the host called authors in different sections of the audience up to receive recognition and awards. It was thrilling to hear my name and Motherhood: Lost and Found announced. And just as thrilling to join the applause when Gilda and Laura’s names were read!
Laura, me and Gilda in the photo area, a bit starstruck, after being called up on stage.
Christina took photos of each of us on stage. Then we proceeded to the photo area where a professional photographer took pictures and we, of course, took our own with our phones.
One of the most interesting parts of the evening was getting to talk with other authors. Gilda and I noted how it was unusual for authors of a certain genre (memoir, in our case) to mingle with authors of another genre. In my typical day-to-day interactions, I tend to have blinders on, blithely ignoring writers of fantasy or science fiction. Yet, here we were in a room where no two authors had written from the same perspective. Once the blinders were off, I realized how much I could learn from these writers.
Posing with our new friend, Ben Burgess, Jr.
We happened to be sitting in front of Ben Burgess, Jr., for instance, who is a New York detective and has written multiple award-winning novels focusing on crime and prejudice. We all commented on how fascinating it was to hear his stories, and we ended up trading copies of our books with him for his latest novel, Black & White.
By the end of the evening, we gave hugs all around to each other and our new friends. Gilda and I were buzzing, though we hadn’t had anything to drink. We could have stayed up all night talking, but we made ourselves lie down in hopes that we could get a few hours of sleep before our alarm went off at 2:15 a.m.
Perhaps we dozed a bit because when we woke up, we were much more groggy and tired. But we managed to gather our belongings and head down to the hotel desk to checkout. We asked the young fellow at the counter if he would accompany us to our car. This was Miami, after all, and it was the middle of the night.
The dark streets were ribboned with light from the street lamps, and we made our way to the Fort Lauderdale airport easily. We turned in our rental car and stood in line at the airport. We made it through security without being searched or even taking off our shoes.
The sun rose outside our window over the Atlantic Ocean as we left the Fort Lauderdale airport.
When we settled into our seats on the plane it was close to 6 a.m. Once we were up in the air, we could see the Atlantic Ocean to our right. A thin line of light hovered at the horizon. I made Gilda stay awake long enough so that we could take photos of the sun rising over the ocean. Then we both closed our eyes and slept.
Before drifting off, I thought of Jean and Vicki and our intimate bond through AlzAuthors. I thought of my deep friendship with Gilda and our affection and admiration for Laura. I felt the warmth of each of these relationships and sensed my mother’s hand on this trip, as if she had somehow helped orchestrate these sweet connections, bringing us all together so that we could reach out to others. I said a silent prayer of thanks.
The sun setting as Laura’s plan landed in New York.
Later that day, Laura sent us a photo of the sun setting as she on her way home to New York. It seemed significant that all of us had witnessed the sun in its transitional state. Laura, who had been so instrumental in the flights of our books, generously ushering them and us through an amazing experience, while Gilda and I were coming home to what felt like a new chapter in our lives, a doorway filled with light, opening towards something yet to be revealed.
Posted: November 15, 2017 Filed under: Alzheimer's, Books, Health, Writing | Tags: Alzheimer's, appreciation, Books, eBooks, health, sale, writing
November is National Caregiver Appreciation Month, a 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 an eBook sale and giveaway! This is a terrific way for caregivers who are looking for knowledge, guidance, and support to find carefully vetted books to help guide and inspire them everyday.
Consider this from the Alzheimer’s Association:
In 2016, 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer’s and other dementias, a contribution to the nation valued at $230.1 billion.
- Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older.
- 41 percent of caregivers have a household income of $50,000 or less.
- Approximately one quarter of dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent, but also for children under age 18.
Starting today through November 21st, you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from free to $2.99. We offer a variety of genres, including fiction, memoir, non-fiction, and children’s literature. Many of our books are also available in paperback and audio, so check them out too.
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.
I’m so pleased to be a part of the AlzAuthors’ administrative team. Working with Marianne Sciucco, Jean Lee, Vicki Tapia and Kathryn Harrison, the women who make up this team, is a privilege. They are all brilliant, kind, hardworking and generous. Each one has a story of how Alzheimer’s has impacted her life.
If you haven’t read their stories, you should! This week is the perfect opportunity. All of their books will be on sale
To see the wide selection of books on sale, visit AlzAuthors.com by clicking here.
Posted: November 9, 2017 Filed under: Alzheimer's, Books, Family, Health, nature, poetry | Tags: Alzheimer's, appreciation, beauty, family, gifts, gratitude, grief, health, joy, love, nature, poems, poetry, renewal, serenity, transitions, writing
(This post was first published on the AlzAuthors
Expressing the Inexpressible through Poetry
By Ann Campanella
When I was in my early thirties, my mother began showing signs of Alzheimer’s. She was 41 when I was born, so I suppose it shouldn’t have been a shock to see her aging in this way. But it was.
I always knew she was an “older mom.” She had been a fount of wisdom for me during my adolescence and early years of marriage.
Mom always said her children kept her young. There was a span of ten years among us, and I had vivid memories of my mother hiking, playing tennis, swimming and sailing at the upstate New York lake we visited each summer.
My grandmother and great aunts lived into their nineties. I had imagined my mother would always be there for me, at least until she was well into her eighties. But it wasn’t to be.
My mother’s mind began to unspool at the same time I was trying to become a mother and struggling through a series of miscarriages. At first her memory became slippery and she began repeating stories. Her emotions seemed out of proportion to what was happening in her life. Her words no longer matched her behavior.
Mom’s descent into Alzheimer’s was heartbreaking and beautiful at the same time. Heartbreaking because she was aware that “something wasn’t right.” It was painful to see her struggling to present a healthy face to the world when her memory was disintegrating. Beautiful because my mother’s spirit showed through her trauma, and the disease became a stage upon which the love in our family could be illuminated and acted out.
Poetry has long been a way for me to attempt to express the inexpressible. When the jagged edges of loss threatened to undo me, writing poems provided a way to hold onto pieces of my mother. Each poem or “stage act” allowed me to bathe my mother’s life in light and meaning.
What Flies Away is a collection of poetry that tells the story of my mother’s illness, my father’s sudden death and the miraculous birth of my daughter. This collection of poems won second place in the Oscar Arnold Young Book Award for the best book of poems in North Carolina in 2007. I was also honored that two of the poems, “The Chase” and “How to Grieve,” earned the Poet Laureate Award.
Now, ten years later, my collection, The Beach Poems, has been published. I consider it a sequel to What Flies Away, as this group of poems shares the story of what “comes after.”
I’ve always loved Anne Morrow Lindbergh’s Gift from the Sea, a book where the author reflects on the patterns of her own life. I was able to do this at the beach.
My mother had Alzheimer’s for fourteen years, and her disease changed me. After a decade and a half of caretaking, it took time for me to find myself again.
During a series of retreats, I spent time walking the sand and absorbing the rhythm and beauty of the coastline. Gradually, held in the arms of the wind and waves, I was able to release my grief and begin to heal. Memories of my mother and the time before she was ill slowly trickled in. To my surprise, joy washed over me and I felt my spirit come alive again.
Writing about my mother’s Alzheimer’s experience, whether through poetry or prose has been a privilege. I spent 20 years working on my memoir, Motherhood: Lost and Found, which was featured on this site on January 18th, 2017. My memoir has been recognized internationally and my poems have received many awards.
But I’m most grateful to have had the opportunity – through readings and speaking engagements – to meet and link hearts with those who are walking their own difficult path through Alzheimer’s. The Beach Poems is my gift to them.
I am here
at the edge
of the earth
on a mat of sand
wind cups the curves
of my body, waves
a constant roar
in my ears
blue belt of sky
presses against the horizon
I think of my mother –
all that was and never will be –
cry out into the void
but wind and sand and sea
my mother is here
and not here
and always will be
I hug the earth.
(from The Beach Poems, Main Street Rag Publishing Company)
About the Author
Ann Campanella is the author of the award-winning memoir, Motherhood: Lost and Found. Formerly a magazine and newspaper editor, her writing has been widely published. She blogs about her life and horses at Fields of Grace and has been a guest on many blogs and podcasts. Ann’s poetry has been featured on Garrison Keillor’s The Writer’s Almanac. Twice, she has received the Poet Laureate Award from the North Carolina Poetry Society. She lives on a small horse farm in North Carolina with her family and animals.
Fields of Grace
https://www.amazon.com/Ann-Campanella/e/B001JOWQ3A (Amazon Author page)
https://mainstreetragbookstore.com/?product=the-beach-poems (Main Street Rag Online Bookstore)