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The Perks of Being an Artist

Tag Archives: frontotemporal 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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They’ll Never Have To, But They’ll Never Get To

07 Wednesday Jun 2017

Posted by emilypageart in death, dementia, karma, kindness, Uncategorized

≈ Leave a comment

Tags

Alzheimer's, caregiving, caring for someone with dementia, coping with dementia, death, dementia, frontotemporal dementia

Last night, I found out that someone from my hometown who had dementia died. I had posted about him about a year and a half ago. I never did meet him myself, but I had some contact with his wife and daughter recently as they were making decisions about placing him in a dementia care community. Today, as they were moving him into the facility they’d chosen, he had a heart attack and died. And I don’t know what to feel for them.

I’m devasted for his family. It’s so sudden and so shocking. After agonizing over the decision about how to move forward with his care, it’s all just been undone.

I’m relieved for his family. They won’t have to watch him continue to decline, to lose himself. They won’t spend a fortune on a dementia care facility and worry that the money might run out.

I’m devasted for his family. They don’t get anymore sweet moments with him. No more hugs or holding hands. They don’t have the privilege of caring for him and protecting him. They don’t get to tell him they love him.

I’m relieved for his family. They’ll never have to tell him they love him and have him look back at them blankly, not knowing who they are. They won’t have to fight for him to get the care he deserves, or deal with dirty diapers or disappearing hearing aids or choking incidents.

I’m devasted for his family – especially his daughter, who wasn’t there when it happened and so didn’t get to say goodbye.

I’m relieved for his family. His death was quick – no nights spent in recliners by his deathbed, waiting for his pain to finally end.

There’s no good way for this whole journey to go. There’s no easy path. Dementia sucks, plain and simple. So maybe send a little love out to the universe for his family – and all the other families coping with dementia – today, in the hopes that it will ease some tiny piece of their pain.

Dad and Em at Bodos 10-27-14 2

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YouTube Book Review

04 Sunday Jun 2017

Posted by emilypageart in art, blog, book, culture, dementia, Fractured Memories, gratitude, karma, kindness, Uncategorized

≈ Leave a comment

Tags

Alzheimer's, art about dementia, book about dementia, book review, dementia, Emily Page Art, Emily Page author, Fractured Memories, frontotemporal dementia

Brittany, from BrittanyReads, posted her spring indie author wrap-up on youtube, and included a review of my book, Fractured Memories. So now you don’t have to read the review, you can watch it, because screw reading, amiright? Oh, wait. The review of my book starts at around 4 minutes 45 seconds. Please go show her channel a little love, and check out some more indie books!

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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!!

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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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I Have a Face For Radio, So Tune In!

06 Thursday Apr 2017

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

≈ Leave a comment

Tags

Alzheimer's, art about dementia, book about dementia, bourbon, bourbon martini, caregiver, caregiver radio show, choice radio network, dad, dementia, frontotemporal dementia, Linda Burhans, radio, radio show about dementia

Hey there, shiny, happy people! On Saturday (4/8/17) at noon (EST), I’m going to be on Choice Radio Network being interviewed by Linda Burhans of Linda’s Caregiver Connections. You can read about her show here and listen live here. I believe you can listen to archived shows on her site (http://www.connectingcaregiversradio.com/), so if you’re not able to listen live, hopefully you can listen later.

As you listen, imagine me prettier and thinner than I am in real life. And imagine that I smell like I took a shower sometime in the last week.  God, I love radio. And imagine me sipping a bourbon martini glamorously while we chat. Okay, maybe a bourbon martini wasn’t a thing until now, but I trust you kickass people to make it happen.

I used to host a radio show in Virginia with my dad, and generally, this is what happened each show:

me and dad dancing at WTJU

And this is without bourbon martinis…

So expect good things. Hope you can tune in!

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

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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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

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

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!

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

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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Emily Page

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