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The Perks of Being an Artist

Tag Archives: FLD

Holla!

18 Thursday May 2017

Posted by emilypageart in art, blog, book, death, dementia, Fractured Memories, humor, karma, kindness, painting, Uncategorized, writing

≈ 2 Comments

Tags

Alzheimer's, art, blogging, book, book review, dementia, dementia book, Emily Page Art, Emily Page artist, Emily Page author, FLD, Fractured Memories, frontal lobe dementia, frontotemporal dementia, FTD, indie authors

Just got another great review of the book by a book blogger! Hollaaaaaa! Check it out on her blog, Brittany Reads, or read it below:

“Fractured Memories: Because Demented People Need Love Too by Emily Page is a profoundly raw account of one family’s experience of caring for a father with frontotemporal dementia (FTD).  The story is told from the perspective of an adult daughter (the author) who is caring for her father along with her husband and her mother. The book has three parts.  This first part of the book is much like a traditional memoir, with the author’s experience recounted in a narrative.  The second part of the book reads a bit like a series of journal entries, raw and largely unedited recounts of caring for her father.  The author is an artist, and the third part of the book is a series of paintings she created that out of her caregiving experience.

The author’s love for her father is the greatest testament of this book.  Yes, the author becomes angry, emotionally frayed and anxiety-ridden in the seven years she cared for her father, and sometimes those emotions are even directed at her father.  But she never walks from the situation. Underneath all the difficult emotion was an abundantly present love of a daughter. The first chapter recounts her father’s life before his diagnosis. It’s a beautiful celebration of his life before dementia, including his sense of humor, his extraordinary passion for trains and music, and his time as a First Lieutenant in the Vietnam War.

Frontotemporal dementia is described as disease of a thousand goodbyes, like slowly losing the person you love in stages.  The author writes:

“When I got home, I, of course, got online and started researching the disease. What I saw was not good. Asshole internet, which so very often lies, refused to lie to me that night. The symptoms all matched: odd social behavior (disinhibition), inability to make changes or follow complicated instructions, heightened emotion, depression. Treatment was aimed at managing symptoms, not slowing or stopping the disease. There were no medications for that. Prognosis: death two to ten years after diagnosis, probably from pneumonia after aspirating food because of muscle failure. Two to ten years. Two to ten years. Two to ten years.”

This book leveled me.  I openly wept several times while reading it, especially in the second part of the book that read like a series of mostly unedited journal entries. I learned a great deal about the impact dementia has on a family. I also learned a great deal about how to advocate for someone living with this terrible disease.

The writing style is casual, and portions of the book read like an email from a friend.   It took a while for me to adjust to the casual style. I very much enoyed the artwork throughout the book.  The author uses images of elephants to portray herself, her father, and dementia itself because “an elephant never forgets” and “An elephant’s faithful 100 percent.”  The book ends with a list of songs, a playlist of the music that was mentioned throughout the book and has a special meaning or memory tied to the author and her father.  Fractures Memories is a must read for anyone who loves or cares for anyone living with dementia.”

And now, take a moment to read some of her other book reviews to find some other great new indie authors!!

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If you’d like to see my ridiculous thoughts translated into art, visit my website, or follow me on Facebook and Twitter. Know a caregiver, or someone with dementia, or someone who knows someone with dementia, or someone who knows someone who knows someone else who’s a caregiver? Or heck, do you know a person? Well, you should tell them about my book, Fractured Memories: Because Demented People Need Love, Too. Part memoir and part coffee table art book, I recount my family’s heartbreaking and hilarious journey through my father’s dementia. Available to purchase here (this is my favorite way if you live in the U.S.), here or here if you’d rather get the eBook than a print copy, and here (especially if you want a hard cover copy).

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Someone Really Likes My Book

03 Monday Apr 2017

Posted by emilypageart in book, dementia, Fractured Memories, humor, Uncategorized

≈ 1 Comment

Tags

Alzheimer's, art about dementia, artist Emily Page, author Emily Page, book about dementia, cats, dementia, dementia book, Emily Page Art, FLD, Fractured Memories, frontotemporal dementia, FTD, Nick Page, silly cats

And by “someone,” I mean “the cat,” and by “likes my book,” I mean “likes to sleep on my it.” Dizzy has decided that my boxes of books make an excellent chaise lounge. Therefore, he gives my book a 5-star rating. There’s no higher praise than his approval:

books as chaise lounge

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Thanks so much for reading my ridiculous thoughts! If you’d like to see my ridiculous thoughts translated into art, visit my website, or follow me on Facebook and Twitter. Know a caregiver, or someone with dementia, or someone who knows someone with dementia, or someone who knows someone who knows someone else who’s a caregiver? Or heck, do you know a person? Well, you should tell them about my book, Fractured Memories: Because Demented People Need Love, Too. Part memoir and part coffee table art book, I recount my family’s heartbreaking and hilarious journey through my father’s dementia. Available to purchase here (this is my favorite way if you live in the U.S.), here or here if you’d rather get the eBook than a print copy, and here (especially if you want a hard cover copy).

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Harass Your Local Librarian – But In a Really Nice Way

21 Tuesday Mar 2017

Posted by emilypageart in art, book, death, dementia, family, Fractured Memories, gratitude, humor, karma, kindness, Uncategorized, writing

≈ 4 Comments

Tags

Alzheimer's, alzheimer's book, author, book, book about FLD, book about frontotemporal dementia, book about FTD, dementia, dementia book, Emily Page, Emily Page Art, Emily Page author, FLD, Fractured Memories, frontal lobe dementia, frontotemporal dementia, FTD, FTD book, librarians, library

It’s official! I shipped out over 200 copies of Fractured Memories today. It was a little bit of a fiasco at the post office, but after about an hour, everything was out of our hands and safely in the hands of the awesome postal workers. I had mixed emotions sending them off. It was kind of like kicking my babies out of the nest for them to fly on their own. Part of me wanted to keep them safe at home and part of me wanted to get all those boxes the hell out of my living room. By sending them out, I open myself up to critique, and I suck at handling criticism, even when it’s well-intended. I know bad reviews will come. Not everyone will like it, but all I can do now is cross my fingers and hope that a majority will. And maybe some of those people will like it enough that they’ll tell other people about it. Hint, hint. Like, maybe people will post it on their social media or have their book group read it or…

If you haven’t ordered it because you’re short on cash, consider requesting it from your local library. And ask your friends to request it, too. If librarians get enough requests, they’ll procure copies for their library. If you have ordered it because you’re not short on cash, first of all, congratulations on all the money! Second, consider requesting it from your local library anyway! Then, when you pick it up, thank them profusely and threaten to stuff them full of cookies until they’re sick if they don’t read it themselves. In other words, harass them, but be really nice about it. Librarians can really drive book sales. If they find a great book, they tell each other and recommend it to readers. Maybe tell them if they recommend it to people, a unicorn will visit them in the middle of the night and leave presents and money like Santa and the Tooth Fairy. Or maybe don’t say that because we don’t want them to know how cray-cray you really are. Rein that shit in, people.

***********************************************************************

Thanks so much for reading my ridiculous thoughts! If you’d like to see my ridiculous thoughts translated into art, visit my website, or follow me on Facebook and Twitter. Know a caregiver, or someone with dementia, or someone who knows someone with dementia, or someone who knows someone who knows someone else who’s a caregiver? Or heck, do you know a person? Well, you should tell them about my book, Fractured Memories: Because Demented People Need Love, Too. Part memoir and part coffee table art book, I recount my family’s heartbreaking and hilarious journey through my father’s dementia. Available to purchase here (this is my favorite way if you live in the U.S.), here or here if you’d rather get the eBook than a print copy, and here (especially if you want a hard cover copy).

book-cover-1

 

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This Review Tho’

15 Wednesday Mar 2017

Posted by emilypageart in art, blog, book, dementia, family, Fractured Memories, gratitude, humor, karma, painting, Uncategorized

≈ Leave a comment

Tags

Alzheimer's, Beyonce, book, book campaign, book promotion, book review, Christmas day, dementia, dementia care, Emily Page, Emily Page Art, Emily Page author, FLD, Fractured Memories, frontal lobe dementia, frontotemporal dementia, FTD, Gideon's bible, marketing, Monet, promoting, publish my book, signature

My first order of books arrived today!! So now my living room looks like this:

boxes of books.jpg

As I start to empty the boxes, the cats are becoming ecstatic. They’re convinced it’s Christmas day. So. Many. Boxes. They keep hopping from one to the next.

I’ll be spending the next couple days signing books and preparing to ship out all of the pre-ordered ones. It’s a daunting but exciting task. Especially because I don’t really have a “signature” yet. I mean, I don’t want to sign the way I’d sign a document. My signature on paintings takes too long. So now I have to come up with a new one. Perhaps I should just sign them all with Monet’s signature. That’s legal, right? Think it’d boost my sales? Or maybe I should sign them with Beyonce’s signature – Beyonce the singer, not Beyonce the giant metal chicken (that’s just chicken scratch).

Seriously though. I just got my second review – again from someone I don’t even know. For some reason not knowing them makes me even more giddy because they’re not obligated to say nice things about me. I might have to change my name to Giddy-on. And we can all refer to Fractured Memories as Giddy-on’s Bible. We can put one in every hotel room! Thank you to Book Nation by Jen for a fantastic review. It’s so generous! Click here to read it, then take some time to read some other reviews on her site and maybe find more great books to pick up!

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Thanks so much for reading my ridiculous thoughts! If you’d like to see my ridiculous thoughts translated into art, visit my website, or follow me on Facebook and Twitter. Know a caregiver, or someone with dementia, or someone who knows someone with dementia, or someone who knows someone who knows someone else who’s a caregiver? Or heck, do you know a person? Well, you should tell them about my book, Fractured Memories: Because Demented People Need Love, Too. Part memoir and part coffee table art book, I recount my family’s heartbreaking and hilarious journey through my father’s dementia. Available to purchase here (this is my favorite way if you live in the U.S.), here or here if you’d rather get the eBook than a print copy, and here (especially if you want a hard cover copy).

book-cover-1

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My First Book Review

13 Monday Mar 2017

Posted by emilypageart in art, book, dementia, Fractured Memories, Uncategorized

≈ 2 Comments

Tags

Alzheimer's, blogging, book, book review, dementia, dementia care, Emily Page, Emily Page Art, Emily Page author, FLD, Fractured Memories, frontal lobe dementia, frontotemporal dementia, FTD, marketing

I received my first review for Fractured Memories – and it’s from someone I don’t even know!! Woohoo! This makes it feel a little more real, somehow. Here is a link to her blog, which is an excellent resource full of great ideas for promoting happy and healthy environments for dementia patients. Rachael’s hands-on experience working with people with dementia gives her a depth of understanding that she conveys easily on her blog, so I highly recommend her site. Plus, you know, she said nice things about my book, so she should be rewarded with some visits and comments for that alone, lol. Anyway, check out her review!

***********************************************************************

Thanks so much for reading my ridiculous thoughts! If you’d like to see my ridiculous thoughts translated into art, visit my website, or follow me on Facebook and Twitter. Know a caregiver, or someone with dementia, or someone who knows someone with dementia, or someone who knows someone who knows someone else who’s a caregiver? Or heck, do you know a person? Well, you should tell them about my book, Fractured Memories: Because Demented People Need Love, Too. Part memoir and part coffee table art book, I recount my family’s heartbreaking and hilarious journey through my father’s dementia. Available to purchase here (this is my favorite way if you live in the U.S.), here or here if you’d rather get the eBook than a print copy, and here (especially if you want a hard cover copy).book-cover-1

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Fractured Memories: Because Demented People Need Love, Too

02 Thursday Mar 2017

Posted by emilypageart in book, family, Fractured Memories, gratitude, humor, Uncategorized

≈ 11 Comments

Tags

Alzheimer's, art, book, book about caregiving, book about dementia, caregiver, caregiving, caretaker, dementia, family, FLD, Fractured Memories, frontal lobe dementia, frontotemporal dementia, FTD, humor, marketing, publish my book, self publish, self-publishing

Bear with me (or bare with me, if you’re feeling frisky) for a moment. I realized I should really do a post that doesn’t include me bragging about all the mistakes I’ve made thus far in the self-publishing process and just do a post about the book itself. So here’s the skinny:

I wrote a book.

Now here’s the fatty:

It’s called Fractured Memories: Because Demented People Need Love, Too. Basically, in 2009, my dad was diagnosed at the age of 65 with frontotemporal dementia, a form of dementia that strikes early and progresses more quickly than Alzheimer’s, and for which there is no treatment to slow the progression of the disease. Via art and on this blog, I began documenting my family’s heartbreaking and hilarious experiences.

As a professional artist, I’ve often turned to art as a self-prescribed therapy to help deal with life’s trials. This battle was no different. I utilized the elephant as a symbol for dementia (because an elephant never forgets), and incorporated sheet music into the paintings because my dad had been a musician. Eventually, I created 40 paintings that are included in the book. I began blogging about the range of issues that arose daily as the disease progressed, documenting everything from my own fear of getting dementia, to my dad’s transition to diapers (and the various places he opted to drop his drawers and just “go”), to combatting his compulsions like the need to “clean” the cars with steel wool, to an exploration of how he might have gotten the disease, to finding the right dementia care facility, to the best ways to make him giggle. I approached the disease from the fresh viewpoint of a younger caregiver.

As my readership here grew, so did the suggestions from you awesome people that I turn the blog into a book. After hearing too many horror stories about traditional publishing contracts, I decided to self-publish. I ran a fundraising campaign for my book and presold over 500 copies in less than a month.

My dad was my best friend. He embraced the ridiculous, looked for the good in people, and mentored and helped people whenever he could. Following his diagnosis, when people asked how he was doing, he’d answer, ‘Not bad for a demented guy.’ He looked for the light hiding amidst the pain. He chose to be very open about what he was going through in the hopes that it would help other people cope with their own diagnosis or a loved one’s diagnosis. Writing this book seemed a fitting way to honor that legacy.

I tried not to shy away from the ugly, raw emotion of life with dementia, but I also looked for the laughter where it could be found. Rest assured, you will love my father as much as I do when the book is done, and perhaps gain some insight about how to cope with your own loved one’s dementia or how to support a caregiver.

So now that you’re all frothing at the mouth in sweet, sweet, demented anticipation, here’s where you can get it:

  1. Buy a paperback copy directly from me at http://shop.emilypageart.com/. When you buy it from me, you save a couple bucks and I make more on each book. Win win. And if you tell me you’ve ordered and tell me a terrible joke on any of my posts on the blog after you’ve placed your order, I’ll sign your copy with a terrible joke in return. Win win terrible win.
  2. Buy a hardcover or paperback copy off of Amazon here.
  3. Buy an eBook here or here.

And when you’ve had a chance to read it, and if you like it, please consider leaving a good review on GoodReads or Amazon or the stall door at Starbucks (only on a piece of paper taped to the door, please don’t vandalize). And then make sure your local caregiver and/or dementia support groups know about it. If you read it and don’t like it, please lie.

Hearts and snugglehugs,

Emily

book-cover-1

Floating Elephant says, “Buymebuymebuymebuyme!”

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It’s Almost Book Time, Y’All

05 Monday Dec 2016

Posted by emilypageart in art, dementia, Fractured Memories, painting, Uncategorized

≈ Leave a comment

Tags

art, artist, book, book campaign, dementia, dementia care, elephant art, FLD, Fractured Memories, frontal lobe dementia, frontotemporal dementia, FTD, journal, memoir, painting, publish my book

Several people have expressed an interest in purchasing my new book as a holiday gift. It’s part coffee table art book and part memoir, and it’s full of ridiculousness and love. I’ve been pushing the publisher to get it out in time, but they’ve been frustratingly slow with everything and are anticipating a release date in January. So, I’m offering the book for PREORDER on my own website. When you order, I’ll email you a nice little mock-up of the cover for you to print out and put in a card. You can order your copy at http://shop.emilypageart.com/products/fractured-memories.

Book cover 1.jpg

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Polaroid Memories

05 Tuesday Jul 2016

Posted by emilypageart in death, dementia, family, Fractured Memories, mental health, Uncategorized

≈ 4 Comments

Tags

death, dementia, dementia care facility, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD

Since my dad died 5 months ago, I’ve had dreams and nightmares about him almost nightly. In the dreams, he’s always in the early to middle stages of the dementia and either he’s wreaking havoc or I’m trying unsuccessfully to protect him from something. As a result, I have not really wanted to go to bed. When I do, I tend to lie there and start remembering him, which upsets me, because I’m never remembering good stuff. It’s never the stuff from before the disease took hold. I have crisp, clear memories of just about everything following putting him into the dementia care facility, but memories before that are hazy.

Except “hazy” isn’t the right word. I was trying to explain this to S a couple nights ago. Since as far back as I can remember (which isn’t as far back as you’d think, which I’ll explain in a minute), my memories have been dark, like when you’ve been outside on a really sunny day and then go inside, and you have those couple seconds before your eyes have adjusted and everything is just too dark to make out clearly. I have little snapshots of images or events, like old Polaroids that are dark around the edges (and like my peripheral vision is gone), but they seem like just that – photographs, not actual memories. When I was in 6th grade, I fell off a horse and got a really bad concussion that caused me to lose my memory. I still knew who I was and that kind of thing, but my short term memory was affected for awhile (which made school interesting) and I forgot much of my early childhood memories. I have no memory of the event itself that caused the concussion. We jokingly referred to my life before the fall as BC (before concussion). Eventually, over time, I recovered some memories. I’d be in class in college and suddenly remember that I had a trundle bed and call my parents all excited that I remembered something. I think I’ve also made up memories based on old home movies and photographs, which may account for the dark, photographic quality of so many of my “memories.”

The problem is that my memories of my dad before the dementia are like that, too, now. I can remember little snippets of who he was or what I loved about him, but they’re too dark to grab hold of and examine or take pleasure in. They’re a concept of who he was, not who he really was. And when I miss him, I’m less missing him as he was pre-dementia than I am missing the child he became to me. When I miss his hugs, it’s not the lean, fit dad I had had, it’s the huge-bellied, slightly stale smelling man-child wrapping me up in his arms. I guess it was just too long a time that we had to know him as not-him, and those are the memories and images that are seared into my brain. Maybe I was so busy committing them to memory in anticipation of losing him completely someday that it made me forget him.

And so, when I lie in bed, I have to fight those harder images – especially the ones from his last few days. I try to do everything I can to wear myself out enough that I can just go to sleep, staying up later than I should so that I can collapse into bed and not have too much time to think. I did that a couple nights ago, with the result being that I felt both nauseated and exhausted, which was how I felt over the couple days that Mom and I spent in his room waiting for him to die. And suddenly, I was in a flashback. I was back in that room, with the horrible sound of him moaning and the oxygen tank pumping away, with his arms and legs seizing and turning purple, and I felt so helpless again. So fucking helpless.

I’m brought down by the thought of how much he suffered and of how he wouldn’t leave us – how he moaned a little louder every time I told him it was time for him to let go, and how he waited until Mom and I finally both left the room at the same time to die. That agony he displayed haunts me.

I’ve been trying to do that thing where, when you have a really bad memory, you try to focus on something happier, but those happy memories of him from before the dementia…they’re just so damn dark. I can’t focus on them because they’re not solidly there. I can think of other vaguely happier or funnier memories of him when he was more alert and I could still make him laugh, but those memories are still sad ones, so they don’t help much.

So that’s what I’m doing right now. Sitting here waiting until I’m so tired I have to go to bed, but worrying that if I get too tired, I’ll put myself into another flashback. Breathe in, breathe out, breathe in, breathe out.

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Two Urgent Thoughts

26 Tuesday Apr 2016

Posted by emilypageart in art, death, dementia, Fractured Memories, humor, kindness, Uncategorized, writing

≈ 2 Comments

Tags

Emily Page Art, FLD, Fractured Memories, frontal lobe dementia, frontotemporal dementia, FTD, Nick Page, publish my book, Publishizer

First, I urgently need you to know that on Sunday, I saw a bumble bee poop and then wipe its butt with its back legs. I felt horrible that I didn’t have any teeny tiny toity paper to offer it. That has to be so humiliating to have to wipe up with your own legs, or really, anyone else’s legs, either. That’s just awkward.

Second, I urgently need you to know that there are only 5 days left in my book campaign. So if you’ve been thinking, “Oh, I want to order but I have plenty of time and there’s a new cat video I need to watch on youtube,” now is the time to pause the video and watch a cute platypus video instead. And then go here to read my book proposal and pre-order yourself a copy for as little as $7. And then post a link to your own social media pages for anyone else who might be interested. And then have a tall glass of bourbon and resume cat video watching and try to forget what I told you about that bumble bee smearing poop all over its legs.

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There’s No Crying in Baseball…Or Writing?

20 Wednesday Apr 2016

Posted by emilypageart in art, death, dementia, Fractured Memories, gratitude, Uncategorized, writing

≈ 1 Comment

Tags

book, book campaign, dad, father, FLD, Fractured Memories, frontal lobe dementia, frontotemporal dementia, FTD, publish my book, Publishizer

I’m down a finger as I type this because I have a blood blister on the tip of my ring finger from framing a painting today. Try typing without using that finger. I double dog dare you. It’s rough. Do you see how I suffer for my art?!!! But I’m fighting through the pain (which really barely hurts but with which I plan to milk sympathy out of my husband when he gets home tonight) because I have to let you know that I’m 10 pre-orders away from hitting the 500 mark. Fer rillz. I was so worried that I wouldn’t even be able to hit the 250 mark, and we busted right through that goal in about 3 days. I could cry, but I won’t, because apparently when I start I don’t stop. On Monday, I watched Grey’s Anatomy and started crying. Then I kept crying through 2 episodes of Dance Mom’s. And kept crying while I fixed dinner and checked some emails. I’m not even kidding, you guys, I cried for almost 4 hours and I didn’t even know why. I cried so long I got dehydrated and basically had a hangover the next day. So I have resolved not to cry for the next several days. If I’m going to have a hangover, it should be from too much bourbon, not too much crying. But the real point of all of that was to say thank you to everyone who has pre-ordered the book and/or shared the link to the campaign on their own blogs and other social media pages. You’re helping me make a pile of shit into lemonade (the spiked kind). You make a girl feel loved.

For anyone stumbling across the blog over the next few days who doesn’t know what I’m talking about, you can read my book proposal at https://publishizer.com/fractured-memories/. Then order a copy and tell your friends!

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Emily Page

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