• About

The Perks of Being an Artist

~ Because demented people need love, too.

The Perks of Being an Artist

Tag Archives: caretaker

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!”

Share this:

  • Twitter
  • Facebook
  • Pinterest
  • StumbleUpon
  • Reddit
  • Tumblr

Like this:

Like Loading...

I’m So Royally Pissed Off At Dementia

08 Friday Jan 2016

Posted by emilypageart in death, dementia, family, Uncategorized

≈ 15 Comments

Tags

anger over being a caretaker, caregiver, caretaker, death, dementia, dementia care, dementia care facility, dementia ward, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD, memory care

Last night was the 2nd time since my dad was diagnosed with dementia that I truly got mad at him. It’s not even remotely his fault, but I am angry. So goddamn angry.

The first time, I was home alone with him one night during the year that S and I lived with my parents to help care for him. My mom and S were out of town so I was home alone with him. It was time for bed so I sent Dad upstairs thinking he could get himself to bed. Not long after he’d gone up, he came downstairs and knocked on my door and, in a very cranky voice, said he couldn’t sleep because there was a light on making the bedroom too bright. I figured it was a light from the back porch, so I went up to double check and saw that it was still on. Turned it off and sent him back upstairs again. A few minutes later he came down again and irately told me that I hadn’t solved the problem. I had to get up early the next day, and I was exhausted from having watched him on my own the last couple days, so I told him that the light was already off and he needed to just go to bed. And then he told me to fuck myself. My father, who had been my best friend, who had never cursed at me my entire life, told me to fuck myself. That’s when I just lost it. I screamed at him. Just. Plain. Screamed. I was so angry at how he’d upended my entire life and now he was telling me to fuck myself? I’d moved in to care for him, leaving behind my house and friends in FL. I had no life in VA now that I lived with him because he constantly needed watching. I stormed upstairs, pretty much dragging him behind me to prove that the fucking light was fucking off fucking fuck fuck fuck. When we got to his bedroom, there was indeed a light still on blazing through the window. At some point that day, he had turned a light on from a different porch and his room was ridiculously bright and there was no way he could have slept like that. I felt horrible. It was not his fault. The cursing wasn’t even his fault. It was the disease. I haven’t been mad at him since.

Last night, I got mad again. Really mad. Raging mad. And once again, it’s not his fault. The facility where he lives has decided that he absolutely must be moved to the skilled nursing facility that we hate. We had enrolled him in hospice because someone suggested that if they had the extra help from them, he could stay put. So we did that. But apparently, that’s not enough. They’re “not licensed for full care.” Of course, no one mentioned that was an issue when we moved him in. No one said he wouldn’t be able to age and die in place. They kind of ambushed my mom at the care planning meeting today with that lovely little tidbit. She called me afterward, sobbing. So now we either have to move him to this dark, depressing, awful facility linked to where he is now, or go searching again for a different facility where visiting him won’t be so terrible. And spend the money and the time to have him moved. And his long term care insurance has run out, so it will all be out-of-pocket. And the thought of him being more disoriented and possibly scared and unable to tell us he’s scared breaks my fucking heart. And I’m tired of my fucking heart being fucking broken. I’m tired of being a caretaker. I’m tired of fighting to get him the care he deserves. I’m tired of having him not recognize me or what I’m going through. I’m tired of trying to choose the least awful option for him. I’m tired of walking the line between getting him great care and extending his life unnecessarily. I’m tired of caring. I’m tired of feeling like I’ve got an open wound that no one can see, and still having to put on a happy face at work and pretending like I’m not so utterly exhausted by grieving for the last 6 years that I can barely think straight. I’m tired of watching him suck the joy out of my mom’s life. I’m tired of having to watch her battle everyone around him just to keep him safe and whatever version of happy he can be. I feel so horribly, horribly guilty for feeling like I just want this over. No more. We’ve been through enough. I know it’s selfish, but right now, I don’t even care. I know I’ll regret feeling this way once he’s really gone. I know I’ll wish I had him back regardless of his condition. But I don’t care right now. I just want this to go away so I can move on. I’m tired of one crisis after another.

I sat on the bathroom floor sobbing last night and wishing my dad would choke on some food and die. Or wishing a nurse would accidentally give him too many meds and his body would finally call it quits. I’m so fucking mad at him for putting us through this. I mean, I’m mad at the disease, but it’s manifesting through him, and therefore he’s the target of my wrath right now. I feel so guilty writing this, but I need to get it out of me. And I’m betting there are plenty of other caretakers who’ve felt this way. So I’m just going to say it.

I’m angry at him for getting this disease. I’m mad at him for putting us through this, even while I know he would never in a million years have wanted this to happen to any of us. I’m just so fucking mad. So mad. So. Mad.

Share this:

  • Twitter
  • Facebook
  • Pinterest
  • StumbleUpon
  • Reddit
  • Tumblr

Like this:

Like Loading...

Renaming Dementia

26 Friday Jun 2015

Posted by emilypageart in dementia, humor

≈ 1 Comment

Tags

Alzheimer's, caretaker, demandtia, dementia, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD

Because dementia demands so much time and energy and thought from the caretakers of people afflicted with the disease, I have decided to rename it “demandtia.” What are the odds that I’ll forget that? Wink.

Share this:

  • Twitter
  • Facebook
  • Pinterest
  • StumbleUpon
  • Reddit
  • Tumblr

Like this:

Like Loading...
Follow The Perks of Being an Artist on WordPress.com

Emily Page

Emily Page

Check Out the Art

You can view my artwork on Facebook or on my website at http://www.emilypageart.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Archives

Buy Fractured Memories!

Buy the book!

Goodreads – Fractured Memories

Follow The Perks of Being an Artist on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 2,251 other subscribers

Buy Fractured Memories!

Buy Fractured Memories!

Blog at WordPress.com.

  • Follow Following
    • The Perks of Being an Artist
    • Join 501 other followers
    • Already have a WordPress.com account? Log in now.
    • The Perks of Being an Artist
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...
 

    %d bloggers like this: