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~ Because demented people need love, too.

The Perks of Being an Artist

Tag Archives: frontal lobe dementia

Is This What It’s Like?

17 Tuesday Jul 2018

Posted by emilypageart in dementia, health, mental health, Uncategorized

≈ 6 Comments

Tags

Alzheimer's, brain fog, caregiver, dementia, early stages of dementia, forgetfulness, frontal lobe dementia, frontotemporal dementia, migraine

For the last few days, I’ve been stupid. Alarmingly so. I get menstrual migraines, and a big part of them, for me, is that I can’t think straight. I get forgetful, I can’t concentrate, and logic doesn’t exist. My brain pod hurts, sure, and I get some nausea and visual disturbance, but I can keep mostly functional with meds. Except for the stupid. The meds don’t touch that. And the stupid makes life incredibly difficult – particularly this cycle. It reminds me of when I got a concussion at age 11 and lost my memory. I’ll have a conversation, and 20 seconds later, forget what it was about. I’ll know we talked about something, but I can’t tell you what. It took me 15 minutes to pack my lunch bag this morning because I kept opening the fridge to get something and forgetting what I was looking for, or setting some ziploc baggies down and forgetting where I put them.

And then I panicked. Is this what the early stages of dementia feel like? Stepping back and examining what I must look like – shuffling back and forth to the fridge but not taking anything from it, hunting for the ziploc bags that are right in front of me – I realized that this is exactly what I’ve seen dementia patients do. It’s terrifying. Is this how my dad felt in the beginning? Did he realize it? Did it scare him? Is this what I’ll be like when I first get dementia? Will I recognize it? Is it already happening? How would I know if this was migraine effects or dementia, given that the kind of dementia my dad had can hit even when you’re still young? I mean, this is clearly migraine related, but my level of brain fog during my migraines seems to be getting worse. Is it a sign?

I doubt anyone who’s been a caregiver to someone with dementia – especially to a parent – hasn’t at least briefly worried that they’ll develop it, too. I’d bet every one of us has listed the reasons why it’s more or less likely that we’ll suffer the same fate. I mean, my dad had dementia. I’ve had 5 concussions. I get migraines. I’ve been on various meds that could have altered something in me, upping the odds that I’ll get it in some form. I feel like it’s inevitable. It’s just a matter of when it’ll hit. And who would take care of me? I don’t have kids or nieces and nephews.

Normally, this would be the point in my post where I’d give you some kind of silver lining or put it all in perspective to make us all feel a little better. But I’m not up to it right now. Right now I’m just scared and in pain and I needed to say this all “outloud.”

Let’s make a pact, okay? I’ll keep voicing these fears, and you’ll be honest with me. If you ever feel like you’re seeing signs in me, please speak up. And I’ll do the same for you. And we’ll do our best to take care of each other.

Dat Dere_compressed

Dat Dere – explanation here

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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!!

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

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!

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

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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Jenny Lawson Is My New Bestie

12 Sunday Mar 2017

Posted by emilypageart in art, blog, book, dementia, gratitude, humor, kindness, painting, Uncategorized

≈ Leave a comment

Tags

Alzheimer's, author talk, blogging, book signing, dementia, Emily Page, Emily Page Art, Fractured Memories, frontal lobe dementia, frontotemporal dementia, inspiration, Jenny Lawson, Quail Ridge Books, The Bloggess, You Are Here

So, this happened.

Jenny Lawson

Yes, that’s The Bloggess, Jenny Lawson, hugging my book and pretending that she wouldn’t rather be barricaded in a pillow fort surrounded by furry woodland creatures. She is now my new best friend, by which I mean that I have met her and gotten her signature and forced my book upon her. If you’ve been hiding in your own fort and somehow don’t know about her, stop everything you’re doing and go start reading her blog immediately: The Bloggess, and then buy all 3 of her books. And then buy my book. I mean, Jenny Lawson is hugging it, which means that, even though she hasn’t read it, she totally loves it and thinks you will, too.

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

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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Buddha

04 Saturday Feb 2017

Posted by emilypageart in art, culture, death, dementia, family, Fractured Memories, humor, painting, Uncategorized

≈ 6 Comments

Tags

Alzheimer's, art, artist, Buddha, dad, dementia, dementia care facilities, Emily Page, Emily Page Art, father, Fractured Memories, frontal lobe dementia, frontotemporal dementia, FTD, oil on board, oil painting, paint, painter, painting, Raleigh artist, statue

It’s been a tough few days for me. Tomorrow is the first anniversary of my dad’s death, and I’m missing him somethin’ fierce. Images from his final, painful days keep creeping into my head and stealing my breath, even though I thought I was past that trauma. I’ve been in duck and cover mode as a result, and wanting to just hide under a rock somewhere far, far away from the world. But that’s not how life works, so I’m turning to paint. With brush in hand, I’ve been tapping and dabbing and flicking my way through the pain, trying to find a more meditative state. It’s been hard, so I took the whole meditative, zen thing a little more literally, this time focusing on the Buddha.

My dad had loved yoga in the years prior to the dementia hitting, and he still practiced it for awhile after we moved him to a dementia care facility. There was a statue of the Virgin Mary in the courtyard of the facility, and every morning, my dad would go outside, bow to the statue and say, “Namaste.” Thinking of that now, even in the midst of all this sadness, brings a quiet smile. Namaste, papa.

Buddha.jpg

Buddha 7″ x 5″ oil on board $150

Original available here. Prints here.

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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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Last Painting For the Book

13 Tuesday Sep 2016

Posted by emilypageart in art, Fractured Memories, gratitude, mental health, painting, Uncategorized

≈ Leave a comment

Tags

art, artist, book, crying, dad, dementia, Fractured Memories, frontal lobe dementia, frontotemporal dementia, laughter, paint, painter, painting, tears

I wasn’t happy with the final image I’d created for my book about my family’s journey through dementia. We’re in the print layout phase of Fractured Memories, and it was irking me that the final painting was one that didn’t really fit with the others. This is the last chance to make changes to the content of the book, so I had to act fast. So this weekend between classes, I knocked out a new one that I think is much more in keeping with the rest of the paintings being featured.

It was a good reminder for myself that each day will be different as we grieve. We’ll have days where we’re fine, where the joy of the world surrounds us, where we’re at peace with the journey we’ve been through. We embrace those days as they come. But there will be harder days, too: days where it doesn’t feel like we can hang on, where we ache with grief, where we shake our fists at the injustices we’ve been handed. And we accept those days as they come, too, knowing that they are necessary in order for us to process the pain and move forward. We need to acknowledge both sides in life and not feel guilty either when we let go of the pain for a bit or when we feel like we just can’t cope and the pain comes crashing down on us. Both are necessary if we are to truly live and love in this brief span of time we get on earth.

we-laugh-we-cry

We Laugh, We Cry 20″ x 16″ acrylic on canvas

 

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Emily Page

Emily Page

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