Because Demented People Need Love, Too
Part coffee table art book and part memoir, I recount my family's heartbreaking and hilarious journey through my father's dementia.
Ended
My father was diagnosed in 2009 with frontotemporal dementia - a form a dementia that strikes earlier and progresses more quickly than Alzheimer's, and for which there is no treatment to slow the progression of the disease. He had been my best friend, so there was no question that I would do what I could to take care of him. My husband and I moved across the country to live with my parents to help my mother care for him, but even with 3 of us alternating shifts to watch him, it became too difficult for us to keep him safe. He had become the world's most destructive 5 year old in a very fit and capable 66 year old body. After a year of living together, we were able to secure a room for him in a dementia care facility, where he lived until he died in early 2016.
As a professional artist, I have often turned to art as a self-prescribed therapy to help me deal with life's trials. This battle has been no different. I have created roughly 35 paintings (and counting) in an effort to understand and explain both what happened to him and what happened to us, his caretakers. Using the elephant as a symbol for dementia (because "an elephant never forgets") and incorporating sheet music (because my dad was a jazz musician), I address a range of issues from my fear of getting dementia myself, to his transition to diapers, to the best ways to make him giggle, to an exploration of how he might have gotten the disease. Eventually, I intend to hold an art exhibit of the works. Here are a couple of the paintings I've completed:
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https://www.facebook.com/media/set/?set=a.10150639437923361.410806.113984173360&type=3
https://www.facebook.com/media/set/?set=a.10150639437923361.410806.113984173360&type=3
About a year ago, I started blogging about our experiences, and the response has been overwhelming. As the baby boomers age and more and more people are diagnosed with various forms of dementia, this is a very timely memoir. I have not shied away from the ugly stuff, nor have I failed to laugh at the ridiculous circumstances in which we often found ourselves. I have done my best to present our journey through dementia with honesty and love. At the urging of several people, I have decided to write a book, including the images of the artwork I've created, in hopes of providing comfort to those who will see similarity with their own family's experiences, guidance for those whose loved ones are at the beginning stages of the disease, and perhaps a little comic relief to remind us to look for the light in all of this darkness.
The book will start with the eulogy I gave at my father's memorial celebration. Then I'll flash back to a brief overview of his life.
The second part of the book will talk about the early years following his dementia diagnosis. Included in this section will be practical advice on talking to and taking care of a loved one with dementia - from keeping them safe to financial planning to choosing a dementia care facility.
The third part of the book will talk about the final years of his dementia, our struggle to advocate for him, his death, and the aftermath.
Throughout the book, there will be images of paintings about the various topics.
This book comes at a moment when the baby boomers are starting to show signs of dementia. Many of them have already dealt with aging parents who had some form of dementia, and now they're facing spouses and friends with the disease. They, their children, and other loved ones must navigate a treacherous world of minute and gargantuan losses, paid facilities and caretakers, and fear about their own futures. As we live longer and longer, almost guaranteeing the number of people with dementia will rise, this book will be relevant for many years to come.
I'm hoping to promote the book in two ways: 1) through my blog and social media, and 2) through the Alzheimer's Association and its support groups. I plan to donate a portion of the proceeds to the Alzheimer's Association to aid in their efforts to support families affected by dementia.
I'm planning on self publishing the book so the funds raised from pre-orders will go toward having the artwork professionally photographed and toward the full-color printing costs.
But it is possible to attract a publisher if I have enough pre-orders, in which case the funds will go toward paying my assistants to teach some of my art classes for me so that I can dedicate more time to finishing the book, thus allowing me to complete it more quickly. So help a girl out and order eleventy-two copies today!
I have not yet seen any books that combine artwork about dementia with a memoir. Artwork can express emotions that words can't always explain. I've also noticed that memoirs tend not to include practical advice. So, I'm not sure there are any competing books out there at this time.
There are certainly complementary books, like Still Alice and Being Mortal.
A little more than a year before her father died from frontemporal dementia, she started writing about her family's journey through the disease.
She has also been creating artwork to help her process her feelings surrounding his disease and death. After getting a tremendous response to both the paintings and the writing, she decided to combine the two into a book, recounting the sometimes hilarious and often heartbreaking reality of caring for someone with dementia.
You can see her art at http://emilypageart.com/ and read her blog at http://emilypageart.net/
500 copies • Partial manuscript • Looking for literary fiction and nonfiction with a global affairs bent.
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100 copies • Completed manuscript.
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Hello there, glorious Fractured Memories readers!! As you all know, I opted to self-publish the book, which means that promoting it is up to me. …
Um, so, yeah. We've hit a snag. The publisher I chose kind of, well, sucks. I'm currently in the process of cancelling my contract with …
We're getting close to the finish line, everyone! The final print layout has been approved and we're waiting on the mock-up of the final front and …
Awwwww yeeeeaaaaaahhhhh! Got the first print layout proof back and I'm losing my mind. It's so...real. I DID that. Me. ME. Surprisingly, it looks like …
Guess what guess what guess what guess what?! I just got the copyedited manuscript back from the publisher, who said this, "I think you are going …
Ohmygodohmygodohmygodohmygodohmygodohmygod! I just won a grant! Not Ulysses S. Grant - although that'd be pretty cool, if maybe a little stinky since he's been dead …
It's official! I have signed with a publisher. I was offered both traditional publishing options and self-publishing options, and I have decided to self-publish. It'll mean …
I tried using the voice recognition software on my phone to take some notes while I was riding in the car, but it wasn’t very …
So, I didn't mention when I did that campaign that I was part of a "Write-Off" contest here on Publishizer. Basically, whoever attracted the most …
It's official. The first draft of Fractured Memories is complete. And it didn't kill me. Still need to finish up 2 final paintings to be …
Just a quick note to update you that we sold 548 pre-orders of the book! There are not enough words in the English language or any …
Only 9 hours left! Thank you to everyone who has pre-ordered. You're the light in my life, the butter on my bread, the bourbon in my glass. If …
Have you ever seen me be giddy before? It looks like this:
We hit my goal of 500! This gives me so much more credibility …
We just hit 400 pre-orders. I could cry, but, like, good cry. The you're-making-my-dreams-come-true kind of cry. We still have 16 more days to get …
Hi everyone, Just one, quick, glorious update. We're up to 368 pre-orders for the book, which is about 73% of the way to my goal …
Can we all just stop for a second to acknowledge the awesomeness of you? You people are the BEST people. In ALL the land. We …
Seriously, you're going to make me cry. Three days in and we're already 80% of the way to 250 pre-orders. You're making this happen for me. …
It's only been two days, and we're half way to the 250 pre-orders mark! All because you guys are so incredible, stupendous, and crazygreat! Yes, …
You guuuuuuuuyyyyyyyys! It hasn't even been 24 hours since I launched the campaign, and we're already 40% of the way there. I could cry. Please …
Can't wait to read the book!
I can't wait to read and experience this beautiful book!
Emily, My mother died 2 years old of the same thing. I want to support you the best I can.
Good Luck my friend,
Samantha L. Heart
Love, gratitude, joy to you! We are all so proud of you, Emily!
Looking forward to reading your work!!
Please support this wonderful person & artist
You are amazing! I look forward to receiving your book.
This is so exciting! You should have some bourbon right now. Louise
My mom has dementia and we just placed her in a memory care unit. I look forward to reading about your experiences.
Talented AND gorgeous
So proud of you and happy to participate.
Good luck Emily!!! You are smart and so funny! Your writing always makes me smile. xo Carter
good for you!
Wishing you all the best, Emily! I know your Dad is smiling down on your awesome project from Heaven (where "Red Hot Smoothies" resounds :-) Hugs, Teresa Radomski
Go, go, go Emily!
Thank you for sharing your story with us!
I think what you're doing is amazing. Thank you for all that you've done for Special Spaces of the Triangle. I'm excited to see your book and art published. I am keeping one book for myself, and intend three as gifts for special friends who have walked this difficult and painful path.
Looking forward to reading it, Emily.
My dad, too.
Happy to support a meaningful endeavor
Good luck and God bless.
Best of luck Emily!
Emily, your artwork is amazing. If I wrote a children's book for my daughters, could I commission you to illustrate it for me after you finish this book? I'm completely serious. Hope you're doing well, -D Swanson
😘
Jackie's away at college (finishing up her Junior year at FSU, so I've got more than enough to eat here. If you eat meat, I've got a wood burning firepit in the back yard and if not, a decent size wok in the kitchen. You are welcome here any time. No need to be a starving artist.
I am looking forward to receiving and reading your new book knowing that it is going to be good reading!
Hi Em <3. Love you.
Pre-ordered! I am looking forward to reading the book when it's published. Good luck!
:)
Good Luck, Emily!
Josh Dalley
What an awesome tribute to your father. Best of luck, Emily! -Anne
I would have done this sooner, but I had to wait until payday. Looking forward to reading your work.
SOOO proud of you, EP!!!! I'm hungry, too!
I'm pleased I can help. Thank you for being candid about such a serious issue. Cheers!!
Look forward to reading it
Don't throw up! Thanks for writing this!
Rooting for you!!
You go girl!! We all need more cow bell!! Hugs
Looking forward to it Emily!
So sorry for your loss, Emily. I cannot wait to see your precious work of love.
Good luck Emily! your writing is is a tribute to your dad & the amazing relationship you had. It's something to be proud of. good luck! 💙 Tara ( carters friend).
No need for a mention. You Go! We love you kid.
You have done so much for me, during the sickness and loss of my Mom. It is the least I can do for you. Keep up the great work Emily! Thoughts are with you.
I'm so excited for you!!!!
You are a dear
Love you and wish you many, many book sales!
So proud of you! Excited you are taking the challenge of this project. Love you C & C
Great idea Emily, really looking forward to reading your work!
Wishing you much success with this very worthwhile endeavor!
Thank you!
I love you Emily, you are the type of person I want to be.
very good approach.
This is very timely for me. We are moving my husband with FTD into a memory care facility next week. Fractured is a perfect word for the people with dementia and their loved ones. Thanks Emily.
Thank you, Em!
Thank you! Can't wait to read!
I'm so excited to receive my copy. Thank you to Holly MacEwan for telling me!!! Yay.
And You're Pretty Cool Too ;)
YOU'RE awesome!!! <3
I hope you are successful
I have asked my former boss to share this with the Centra hospice staff where I was employed as a chaplain for 7 years. I'm so glad Tamara forwarded the notice to us.
The cover, alone, says it all. Alzheimer's is the elephant in the room that no one is talking about.
Emily, I look forward to reading your book. My father passed in 2013 due to Lewy Body Dementia and I think often of the ups and down of the wild ride that was the last few years of his life.
-David (WFU '05)
Hello dearest Emily. I will be so pleased to see your work. What a wonderful legacy for sweet Nick. Big hugs to you. Cathryn Astin
Good luck. Parkinson's disease is a hideous disease. It looks like you are close to achieving your goal. Glad we could help you get there.
You're doing amazing Emily – congrats :)
I hope this helps.
It is a great idea.
Thank you for sharing your journey. Love and joy to you as you embark on this next chapter to honor your father.
Hey Cuz. You Rock!
To be honest, I'm a little nervous about reading this book, but I know that I should, and that it will be very very good. Good luck with publishing!
I'm sorry it took so long but know that I send you love and support. So proud of your endeavors, your strength and your courage. Keep it up!!! <3
💗💗💗 Thought I did this last week, but you made it to your goal! So happy for you.
Great to be able to help for this cause. Thank you! :)
I'm glad you put notice of your book on 4/22 TheBloggess.com blog
:) Christina
Looking forward to reading and seeing your loving endeavour! Your dad would be so very proud of you ... even more than before.
$7
109 readers
-PDF copy of the ebook
Includes:
$25
92 readers
- a signed print copy mailed to you
Includes:
$40
11 readers
- 2 signed print copies (buy one for a friend!)
Includes:
$60
7 readers
- 3 signed print copies, each with a hand written message
Includes:
$100
11 readers
- your name will be listed as a Person Without Whom This Book Would Not Exist in the book
- 2 signed print copies with a hand written message
Includes:
$150
9 readers
- 1 matted print of one of the paintings from the book
- your name will be listed as an Artsy Fartsy Person Without Whom This Book Would Not Exist in the book
- 3 signed print copies, each with a hand written message
Includes:
$200
0 readers
- 2 matted prints of paintings from the book
- social media shout out on Facebook and my blog
- your name will be listed as an Artsy Fartsy Person Without Whom This Book Would Not Exist in the book
- 3 signed print copies, each with a hand written message
Includes:
$250
0 readers
- 60 minute one-on-one painting lesson via Skype
- 2 matted prints of paintings from the book
- social media shout out on Facebook and my blog
- your name will be listed as an Person Without Whom This Book Would Not Exist in the book
- 4 signed print copies, each with a hand written message
Includes:
$350
4 readers
- an original 5" x 5" oil painting
- social media shoutout on Facebook and my blog
- your name will be listed as an Person Without Whom This Book Would Not Exist in the book
- 3 signed print copies, each with a hand written message
Includes:
on April 4, 2016, 9:43 p.m.
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