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~ Because demented people need love, too.

The Perks of Being an Artist

Tag Archives: dementia care

Don’t Forget To Have Some Fun

01 Monday May 2017

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

≈ 2 Comments

Tags

caregiver, dementia, dementia care, family fun, fly a kite, love

Facebook reminded me recently about taking my dad out to fly a kite. So this is just a reminder for anyone else going through the caregiving experience. Dedicate some time for fun with the person you’re caring for. It can’t all be about the daily caregiving grind. You need to find a way to enjoy the person and remember why you love them enough to care for them in the first place.

For the year that we all lived together, we made Sundays a day to go out and do something fun as a family. So if it was a nice day, we flew a kite or went to a playground. If it wasn’t, we went bowling or out to dinner. Look for ways to rejuvenate yourselves and your love for each other. Get chair massages. Go out for ice cream. Have a picnic in your living room. Watch kids playing at a playground. Enjoy your favorite movie together.

And take pictures. I promise you that you’ll be so grateful later to see pictures of the person you love smiling.

dad with kite 3

dad with kite 2

The memories you build on those days will be a comfort once your caregiving experience is over.

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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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Dementia Care Book Recommendation

31 Friday Mar 2017

Posted by emilypageart in dementia, health, Uncategorized

≈ Leave a comment

Tags

book about dementia, book review, dementia, dementia care, dementia care facilities, Rachael Wonderlin

I swapped books with an author of a dementia care book recently, and I’m relieved to be able to say that it’s great! It’s always a risky endeavor because you never know if you’ll like the other author’s book. Luckily, Rachael Wonderlin’s book, When Someone You Know Is Living in a Dementia Community, is well-written and she definitely “gets it.” It’s full of tips about how to have good visits with someone in a dementia care facility, how to deal with staff, how to keep someone with dementia happy and reduce their anxiety, and how to make interactions with them rewarding for you, too. Rachael has worked at several dementia care units and clearly loves working with this population. She’s a good problem solver and has a lot of patience and empathy. I highly recommend picking up a copy if you know someone with dementia or know a caregiver of someone with dementia. She also has a blog called Dementia by Day. You can buy a copy of her book on Amazon here.

Rachael Wonderlin book

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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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This Review Tho’

15 Wednesday Mar 2017

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

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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!

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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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It’s Almost Book Time, Y’All

05 Monday Dec 2016

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

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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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More Dementia Silliness

14 Thursday Jan 2016

Posted by emilypageart in dementia, Uncategorized

≈ 4 Comments

Tags

dad, dementia, dementia care, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD, teething ring

Lest you, dear readers, think that everything related to my dad is wailing and pulling at hair and gnashing of teeth, let me reassure you that we do, in fact, find things to laugh about along the way. For example, the other day, he was in a group activity looking to all the world as though he was asleep. The activities director was playing word games with the residents, asking for words that start with each letter. When she got to “j,” my dad – eyes still closed – piped up with “justification!” The man can normally barely utter more than “yup,” but he came up with a 5 syllable word that no one around him was likely to have been using beforehand for him to parrot. When we came in a couple days later to visit, the nurse on duty said, “They’re in the music room doing meditation. Nick’s meditating on justification.” Yes.

There are days during which Dad sits with his eyes closed a lot, though he’s definitely awake. When I came in on Sunday to visit, he was sitting there with his finger wiggling around in his ear. It went on for about 10 minutes. My theory is that he was trying to scratch his itchy brain. Hey, it happens.

Dad picking his ear.jpg

He also has a tendency to have very itchy skin, so it’s a battle to keep him moisturized and his nails clipped so he doesn’t compulsively scratch himself raw. He also likes to chew his fingernails down to the skin, then keep chewing, and then chew some more, and a little more after that. He’s a big fan of meals that includes fingernail with a side of skin. But who can blame him? Skin is delicious, apparently. Nails, too. Anyway, we’ve started giving him a teething ring and a couple other baby toys to occupy his hands and mouth and hopefully reduce the likelihood of him gnawing his way to the bone in his finger. He’ll sit there, eyes closed, playing with the toy for hours, thusly:

Dad teething ring 1

Yesterday evening, my mom texted me this pick with the caption, “Dad is armed and dangerous!”

Dad teething ring 2

Yes. Yes he is. Cower in fear before him.

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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.

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Altering a Dementia Patient’s Appearance

04 Friday Sep 2015

Posted by emilypageart in dementia

≈ 1 Comment

Tags

altering dementia resident's appearance, Alzheimer's, beard, dementia, dementia care, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD, haircut

Another word on the dos and don’ts for dementia care facilities:

PLEASE do not change the hairstyle or facial hair of a resident without the family’s permission. This has happened a couple times with my dad. Once, he got ahold of someone’s razor and shaved his whole beard. Another time, a CNA trimmed his beard into a goatee. And now, again, someone took it upon themselves yesterday to change his full beard to a goatee. Since he’s had a full beard for the last 43 years (as long as my mom has known him, and, obviously, my whole life), it is extremely distressing to come in and see him changed. I know it sounds minor, but when you’ve been slowly losing everything about him that you’ve known, having one more thing altering who you know him to be is too much. My mom keeps his beard trimmed herself, and when I saw him on Tuesday, it still looked neat and tidy, so there was no reason to do that. It may actually have been a hospice person who did it. If that’s the case, it’s even more frustrating, because you would think they would understand the importance of not altering the appearance of someone.

We’ve dealt with the weight changes. We’ve dealt with the vacant expressions. Those are outside of our control and we accept them and do our best to not be too bothered by them. But the things that make him look like him in any small way are so important to us. Please don’t take those away from us.

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Emily Page

Emily Page

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