In 2016, friend of Caregiver Wellness Retreat and podcast guest Dayna Steele wrote a personal account of her caregiving journey. Dayna has graciously given us permission to share excerpts from her book with you in our Blog. We hope you enjoy reading these accounts as much as we did.
Opening Words: Dayna Steele
*Paragraphs so marked originally published in the Houston Chronicle “Gray Matters” August 25, 2015.
Odds are you picked up this book because you are caring for someone with Alzheimer’s, have your suspicions about a loved one, or may be concerned about yourself. That is no surprise. The statistics are staggering and growing. Or maybe you got the book because you have followed this journey on my Facebook page. That is where I have lived it out the last few years.
This book isn’t to make you feel sorry for Mom, my family, or for me. It is to give you permission to live and laugh and love and cry and throw things no matter where you are in your journey with Alzheimer’s. This book is to tell you don’t worry, there is no right way or wrong way to approach this crazy-ass disease — you just get through it the best you can.
My Facebook Alzheimer’s update posts, from the time Dad died until we lost Mom, became a personal journey of coping with Alzheimer’s on a very public forum. It was cathartic for me — once I wrote the post, I let go of the sadness, tears, anger, or hate, whatever I was feeling and moved on — never realizing how much the posts would help others, and me.
Since early 2013, I have been chronicling Fran Nicholson’s journey through Alzheimer’s on my Facebook page. Fran is my mom, so this is my journey as well. The posts started as a way to let family and close friends know what was happening, so I didn’t have to repeat the details over and over. It was hard enough to say it once: Mom has been diagnosed with Alzheimer’s. You try it. Now say it 100 times, and see how happy you are.*
Caregivers need a support system, family, and/or friends, to help you through the process.
You will be dragged deep into sadness and depression. You will be confused and worried as to whether you are doing things correctly. You will be worn out from all the effort it takes — whether you take care of your loved one in your own home or in a care facility. It will take an emotional and physical toll on you no matter what your circumstances are like nothing else ever has. You will feel like you are losing a loved one over and over and over as the disease progresses. When it’s all over, you will be stunned at the depth of grief even though you knew it was coming and have grieved through the entire process. You’ll rack your brain with guilt, all the what-ifs. And, it will be somewhat strange to all of a sudden have so many extra hours in a day.
Having always been a fan of dark humor, I used it to relieve some of the tears and fears. I figured if something made me laugh out loud, perhaps others would see the funny side of such an unfunny adventure.*
There is one thing I did not mention in all the updates but felt it needed to be mentioned in this book. More often than not, it is one family member or friend who does most of the caregiving and coordinating. Other family members and friends live far away or are in denial and far away from accepting what is happening.
My mother’s brother and wife, my wonderful uncle and aunt, stepped right in to help and do as much as they could. In the beginning, my only sibling was going through his own crisis with an impending divorce and lived on the other side of town. Another relative commented that Mom was probably ‘faking it for attention’. I can’t remember one person from my late father’s side of the family coming to see her. And, as time progressed, even Mom’s closest friends stopped calling and visiting.
As the disease has progressed, the humor subsided and stark crept in. The posts grew more personal, more raw. I just had to let it out. And I did. Then a strange thing started to happen. It was no longer family and close friends following along — it was friends of friends, former KLOL fans (I used to be a deejay), and complete strangers asking to be Facebook friends or at least follow along. We became a support community for each other.*
There were times I was so angry that none of them were more involved or at least more sympathetic to what was happening. It was my teenage son who helped me let go of that anger by pointing out if my immediate family and mom’s friends accepted the seriousness and the level of the problem, they would then have to be a part of the heart-wrenching solution. They just weren’t in a position or frame of mind to do that at the time. It became my journey they joined from a far. I must add that my brother did finally accept the inevitable and became my hero; talking me off the ledge at various times, letting me rant, letting me cry as well as taking over and giving me a break so many times.
Stories like those add up fast and can be crushing to your soul. About mid-2014 it began to dawn on me that I was writing these updates, and posting them on Facebook, as a way of letting go. I didn’t need therapy; I just needed a keyboard and Facebook. Once I shared whatever was happening, bad or awful, it was if I had released it into the Universe. I no longer had to carry around that piece of dark luggage.*
Until that happened though, I needed support. My Wonder Husband and sons were amazing but it was equally hard on them and they could only do so much to help me — emotionally or physically. That first year we realized something was wrong, I found the more I shared on Facebook, the more cathartic it became for me. Facebook acquaintances and total strangers filled in the void my family and mom’s friends were not filling for me.
I shared what I found to be hysterical dark humor and found others had just as funny, if not funnier stories, as well. Occasionally, I shared the sad and you rallied around me. When I had a question, you had the answers. And, you posted articles, information, your own stories, and messages of support, pictures, and videos on a daily basis to keep me going. There wasn’t space in this book to share the thousands of comments made on my Facebook posts but please know I read each and every one, some-times twice or more.
There have been those, the naysayers, who chastise me for being so honest, so open, and at times so crass, for exposing my mom and her decline so publicly. This sharing is for me. This sharing is for Mom. This is for you who may have found yourself on this journey. Or will. Talk about it. Write about it. Let it out or it will eat you alive.*
My friend Peter Shankman once said figure out what your demons are and find a way to work through them without succumbing to the dark side. My demon has been this insidious disease known as Alzheimer’s and you, my dear Facebook friend, have kept me from the dark side.
In her best-selling memoir Surviving Alzheimer's with Friends, Facebook, and a Really Big Glass of Wine, Dayna Steele candidly chronicled her mother’s journey with Alzheimer’s on Facebook with unfiltered observations and dark humor. Now, she brings that same candid outlook and humor to the play, The Woman in the Mirror. Audiences will be met with Steele’s signature refreshing honesty laced with biting humor that stands testament to her personal strength and resiliency in the face of extraordinary and unexpected circumstances. This is a story about surviving Alzheimer’s while keeping your humor and sanity intact.
When not writing, producing, and acting in a play, Dayna is a popular business success motivational speaker. This rock radio Hall of Famer is also the author of numerous books on success including Rock to the Top: It Now Goes to Eleven - What you can learn about success from the world's greatest rock stars! Woman in the Mirror.