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~ Because demented people need love, too.

The Perks of Being an Artist

Tag Archives: memory

Your Face In My Hands

07 Tuesday Mar 2017

Posted by emilypageart in art, death, dementia, family, gratitude, kindness, painting, Uncategorized

≈ 2 Comments

Tags

art, artist, dad, Emily Page, Emily Page Art, father, intimacy, love, memory, paint, painter, painting, Raleigh artist, This Is Us

Have you all been watching This Is Us? If not, stop everything and go binge watch it. Now. I’ll wait…See??!!! It’s the best show on TV right now. In the most recent episode, a couple of the characters hold each others’ faces to help soothe them in a moment of distress. I was thinking about what an intimate and loving thing it is to touch someone’s face. We do it to our parents, our children, our spouses. It’s like we’re embracing the thing that most tells the world who we are – the physical manifestation of our identity. Even if we don’t normally consider ourselves beautiful, when someone touches our face lovingly, we feel lovely in that moment. It makes us feel seen, accepted, valued. Allowing someone to hold our face takes trust and an acceptance of vulnerability. And holding someone’s face in our own hands makes us feel tender toward them. It makes us generous and protective. It’s a true act of love, probably even more than kissing.

Let’s call it a face hug.

Even more than a year after my dad died, I can still feel his face in my hands. That thought, while sad because I miss it, does bring a quiet joy. And it reminds me of how much love there was between us.

Face in My Hands

Hopefully, I’ll be able to get this up on Etsy soon and post a link for purchase. Until then, you can get prints and other merch here and here.

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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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Remembering the Early Stages of Dementia

17 Thursday Dec 2015

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

≈ 6 Comments

Tags

Alzheimer's, Carol Manning MD, death, dementia, diagnosis, early stages of dementia, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD, memory, Memory Disorders Clinic, Memory Disorders Clinic at UVA, Woodrow Wilson Rehabilitation Center

You know, it’s funny how grieving can sneak up on you. Most of the time, I’m pretty okay with where we are in my dad’s dementia journey. I’d call it a “struggle,” but really, we’re past the point where there’s anything to fight, so “journey” seems more appropriate. While I think about my dad every day, and certainly have moments where the enormity of where we are hits me, I manage to keep the tears and panic at bay a good portion of the time. But there are those times where the grief sneak attacks you. A couple days ago, I was talking to my mom, and she said that a man she knows from the gym asked to talk to her about the Memory Disorders Clinic at UVa because he knew we had taken my dad there for several years. They have an absolutely brilliant and caring doctor there named Carol Manning, MD who we can’t say enough good things about, so Mom was happy to share our experiences about the facility. When Mom sat down to talk to him, she learned that he, like my dad, has frontotemporal dementia. As soon as she told me, I said, “Fuuuuuuuuck!” I don’t even know this man, and I started tearing up. I was devastated for him.

He’s only in his 60’s. Just like my dad. He has a daughter named Emily who is just about the age I was when my dad was diagnosed. Just like my dad. He has stopped driving after failing a test at the Woodrow Wilson Rehabilitation Center that helps evaluate the driving capabilities of people with medical or cognitive issues. Just like my dad. He had been struggling at work and had to retire. Just like my dad. He was scared. Just like my dad. 

When she told me about all of this, I was immediately brought back to the early stages of my dad’s disease. I remember how scared we all were. I remember that it was around this time of year that he went for testing at the Memory Disorders Clinic, and we had to wait several weeks for the results to come back. But we knew that it would tell us he had some kind of dementia, we just didn’t know what kind. I flew up from FL to be there at the appointment so I could hear the diagnosis and ask questions. It had snowed the night before, so it was a worrisome drive to town to get to the clinic, and I remember how tight my stomach felt the whole ride, both from fear of being on the roads and fear of what would happen at the appointment. I remember sitting in the office and hearing the words “frontotemporal dementia” for the first time. I remember being shocked to learn that Dad couldn’t tell time on a clock, and that he couldn’t explain the meaning behind a phrase like “There’s no use crying over spilled milk.” I remember the doctor telling us that there were no cures or treatments that could delay the disease’s progression. Drugs that work to slow Alzheimer’s have no effect on frontotemporal dementia, so all we could do was put him on meds to try to relieve the anxiety the disease was causing. I remember walking to the car in the parking lot and watching my dad’s shoulders start to shake. I remember my mom and dad and I wrapped in a group hug by the side of the car, rocking and weeping. I remember standing there in the cold Virginia air with wet snow seeping into my sneakers and heart and feeling utterly helpless. And in that moment, I knew that I was ceasing to play the role of daughter to him and beginning the role of caretaker. When I got back to FL, I remember going online and looking up the disease and reading the prognosis of a life span of 2 to 10 years following diagnosis. I remember telling my dad not to do anything stupid or noble (depending on your point of view) like committing suicide to spare us.  I remember the terror of what the future would hold.

When I look back at that time, it felt like the world was ending. The tears start flowing remembering how much emotional pain my dad was in. I grieve for how he felt and how I couldn’t make it better for him, how I couldn’t protect him. I grieve knowing that he has become exactly what he was most afraid of being.

So when I learned about this man that Mom talked to who is somewhat newly diagnosed, it throws me back into that time frame, and I grieve for him and his family. I know at least some of what lies in store for them, and I wish I could protect them, too. As Dad’s disease has progressed, and I have had to adjust to the new normal repeatedly, I start to forget where we’ve already been. Each new stage feels devastating. Now that he’s nearing the end, it feels like this is the worst place to be. But remembering how it used to be, that feels equally like the worst place to be. In some ways, I’m grateful that we’re no longer there. Part of me is grateful that we don’t have to go through this too much longer. Don’t get me wrong, I’d give anything to go back to the time early in the disease where he could still laugh at my jokes, or dance around the dining room table with me, or share his love of music, or just give me a proud-papa look. But that time was also so incredibly hard, because he was scared and angry and frustrated and cognizant of the fact that he was losing himself. He had so little control over his emotions and his actions, and he accidentally hurt us, too, sometimes. So while I’d love to have so many of those things back, he’s in such a better place now that he’s beyond knowing what he’s lost.

I’ll leave you with this thought: I was talking to a friend last night about grief. Today is the anniversary of her sister’s death, and she’s grieving hard. She said that she’s been seeing a grief counselor who gave her this thought: Imagine your love is a cupful of water. If you love someone fully, that cup is full. When you lose that someone, the water pours out. The more water had been in the cup, the emptier you perceive the cup to be. We should be grateful that we had such a full cup, even if it means that our grief is that much stronger as a result.

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Mondays With Muddy

14 Monday Sep 2015

Posted by emilypageart in MOndays with Muddy

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Tags

Beatrice Allen Page, Landscape with Figures, memory, Muddy, unpublished manuscript

Here is the next installment of Beatrice Allen Page’s unpublished manuscript, Still Life with Figures:

“Yesterday, shortly after I’d written those pages about searching, Great-Aunt Louise, whom I haven’t thought of in years, stepped into my mind and seems determined to stay. Perhaps she has come back for the sympathetic understanding I failed to give her when she was alive. Be it to my shame, at that time I looked upon her, with the callousness of the young, as rather a comic figure. I try to tell myself now that if she had been a beloved aunt whom I had always known, I should have felt more compassion. As it was, I saw her only briefly, at long intervals, until those last months of her life when she came to stay with us.

She was in her late eighties then, tall, thin, erect, and she never seemed to tire physically. Her mind, however, had grown old. In the words of that warm, tender Jamaican woman, Hallie, who was with us that winter and helped care for her, she had ‘a whimsy in the head.’ Her mind wandered and so did her body; she roamed about the house all day, upstairs and downstairs from attic to cellar and in and out of every room, groping around in every closet, cubbyhole or cranny she could find. She, too, was preoccupied with a search but in her case it must have been more of a frustration than a fascination.

At first when we asked her what she was looking for, she answered a little petulantly that it was something she’d lost. When we asked her what precisely, thinking in terms of spectacles, thimble, handkerchief – everyday objects one might easily mislay – and offered to help her search, her face took on a secretive expression.

‘Oh, nothing,’ she used to answer, and she’d walk away with those prim, quick little steps of hers. We weren’t certain for awhile whether she meant it was nothing worth our bothering about or whether it was none of our business.

When we realized this endless searching was a private obsession and that whatever she was hunting for had either been lost long ago or had never existed, we ceased to question her and pretended not to notice her pathetic quest. If she herself knew in the beginning what she was looking for, I think she eventually forgot what it was and only knew there was something she wanted desperately to find. On and on she went, probing under sofa cushions, behind books, rummaging through old trunks, prodding behind the furnace with a yardstick, down on all fours tapping the bricks in the fireplace with a big kitchen spoon, until one day in an apparent effort to pry up a lose floorboard in the attic, she collapsed and died.

Sometimes I have the feeling that I, too, am doomed to go one searching for something the rest of my life and never finding it because I don’t even know what it is – like looking for the answer to a question without knowing what the question is. It makes me feel rather like a character out of Kafka. I suspect a lot of people are troubled by the same feeling.”

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Yooooou Are Getting Sleeeeeeeepy

08 Sunday Mar 2015

Posted by emilypageart in health, humor

≈ 4 Comments

Tags

cats, CFS, chronic fatigue syndrome, memory, myalgic encephalomyelitis

Lately, my body has been at war with me, and over the last week and a half or so, my chronic fatigue has kicked its efforts up a notch, and frankly, is kicking my ass. I recently went online to do a little more research on it and learned that Chronic Fatigue Syndrome (CFS) is now also being called Myalgic Encephalomyelitis (ME). ME. Really? Doesn’t that just sound like the most selfish condition ever? Aren’t we currently dealing with Generation Me thanks to all the little brats being raised on reality TV? Capital M. Capital E. Oy. Now I just feel like a lazy shit. Also, did they have to name it something so long? Who has the energy to pronounce encephalomyelitis? Instead, I’m thinking of calling it “MEH,” ’cause it’s just hard to get enthusiastic about isn’t it?

That being said, I had the day off from work today and decided to take full advantage and just rest. I brought home some art supplies so I wouldn’t have to go into the studio but could still paint since I have a bagillion and one ideas and my brain is practically itching to create now that my hands aren’t hurting as badly. I got up around noon, got out the art supplies, sat there looking at them, and decided it was time for a nap. I’ve basically spent my day thus far like this: I slept, I ate, I peed, I slept, I got up to stretch my back out and pee again, I slept, I groomed, I slept, I ate, I slept, I yelled at Dizzy-no for trying to use me as a chew toy, I slept.

I have come to the conclusion that I am secretly a geriatric cat trapped in a human body.

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An Elephant Never Forgets

04 Sunday Jan 2015

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

≈ 2 Comments

Tags

Alzheimer's, art, artist, behavioral variant, dementia, elephant, frontal lobe dementia, frontotemporal dementia, memory, memory loss, mixed media, paint, painting

So when I first started doing the Fractured Memories series of paintings about my dad, I chose the elephant in part because of the saying that an elephant never forgets. This is one of the first pieces I made. The sheet music is “Unforgettable” and the background text is “an elephant never forgets.”

An Elephant Never Forgets

mixed media 24″ x 12″

 

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Remember Me

20 Saturday Dec 2014

Posted by emilypageart in art, blog, dementia, Fractured Memories

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Tags

art, artist, behavioral variant, dementia, father, frontal lobe dementia, frontotemporal dementia, memory

One of the hardest things about losing a parent to dementia is when they start to forget you. Luckily, most of the time, my dad still seems to at least know that I’m someone he loves, and often knows I’m his daughter. But there are those moments. And they’re brutal on the heart. It feels like a betrayal, even though it’s 100% outside his control. The disease is forgetting me, he’s not. So we find ourselves practicing with him, as though we can drill our reality into him. We ask, “Who am I?” We ask, “Who is your daughter?” We ask, “Who are you?” We ask, “Do you remember?”

This piece, from my Fractured Memories series, is about that begging we do when he seems to be forgetting.

Remember Me acrylic on canvas, 36

Remember Me
acrylic on canvas, 36″x48″

The text in the background reads: i do not want to remember you when you do not remember me. or, more precisely, i want you to remember me. but, long after your mind has released the strings that tethered, through silver tinted memories, you to me, i will grasp wildly at those tenuous strands. i shall stand before you, insistent, willing you to recall my face and know my name. i will rip through those cobwebs, desperately hoping that, just for a moment, you will return yourself to me.

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Emily Page

Emily Page

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