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: October 12, 2017 Filed under: Alzheimer's, Health | Tags: advocacy, Alzheimer's, friends, grief, health, lessons, transitions
In Part I, Brian faced the devastating diagnosis of early-onset Alzheimer’s. To read about it, click here.
It gradually dawned on Brian that he had only three of four years ahead of him of being cognitively aware. “I thought back to my counseling days when I had to show people that their perspective was keeping them trapped,” says Brian. “I had accepted the perspective that Alzheimer’s wants to give you: You might as well give up. There’s no cure. No hope. I had swallowed it hook, line and sinker.”
Brian realized he had a choice. He wondered what would make him happy and fulfilled. “The answer for me was helping people,” he says. “When I help someone, I feel good.”
This shift in perspective led Brian to create withALZmyHEART, a website that walks people through a diagnosis of early-onset Alzheimer’s. Brian says there were no blogs about adapting to dementia and mild cognitive impairment, so he went about changing that. He tells his story on the blog, shares a wide variety of advocacy projects he’s involved with and offers a page of helpful links.
Brian understands hardship. Soon after his diagnosis, he not only lost his job and his fiancée, but he had to give up his home and even his dogs. Because of his limited income, he had to move into a small apartment. He’s also no longer able to drive.
But none of this has stopped Brian from helping others. He attends conferences and reaches out through social media to others affected by Alzheimer’s.
“I stumbled into being an advocate,” Brian says. Because of his unique ability to articulate about a disease that is a mystery to many, he has been offered speaking engagements and interviews with national publications.
Brian has become the face of Alzheimer’s in PhRMA’s national GoBoldly Campaign, an advertisement promoting Alzheimer’s researchers and patients that runs on multiple television channels. Men’s Health Magazine and The L.A. Times ran stories on him, and he’s been interviewed by CBS Evening News and for a PBS documentary coming out in 2018.
“Because I present well, people don’t know I have Alzheimer’s when they meet me,” says Brian. But, at home, it’s a different story. Brian leaves notes for himself, sets alarms to help him remember appointments and tries to schedule tasks that demand mental alertness early in the day. He explains to reporters that he might interrupt them in the middle of a question, because he doesn’t want to forget an important thought.
To be continued…Part III: Brian’s Biggest Project — Faith2Care
To read Part I: A Devastating Diagnosis, click here. To read Part III: Brian’s Biggest Project — Faith2Care, click here.
Connect with Brian through his social media:
Websites: withALZmyHEART and Faith2Care