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Category Archives: dementia

Engine #25

03 Thursday Jan 2019

Posted by in art, death, dementia, family, painting, Uncategorized

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I started 2019 off the correct way: in the art studio. And it felt so good. I’ve been so busy and exhausted that I haven’t been painting much lately. But I took Tuesday off and just painted what I wanted to paint. And it was a good thing. And it was a bad thing. Because what I chose to paint was this:

engine #25_compressed

Engine #25 acrylic on canvas 24″ x 30″ $750  *links for purchasing the original and for prints and such at the end of the post

You know, ’cause my dad was a train freak. Next month will be the third anniversary of my dad’s death, and between that knowledge and the holidays, I’ve been missing him something fierce. About a month ago, S poppped in some of my old home movies, and I got to watch my dad in his 30’s – younger than I am now. And, for the first time since he was diagnosed with dementia, it made me actually feel happy to watch. I really enjoyed it. And then I started having nightmares about him again. WTF is that? I wasn’t sad watching those videos, so why did they spark a new round of “Dadmares?”

And now I’m struggling again. Every time I feel like I’m getting back to normal, thinking about him a little less and with less pain, I get thrown back in. And what I’m thrown into, more than anything, is those final, horrible days with him, when he was hurting so much and my mom and I couldn’t make it better for him. It just fucking haunts me. I worked so hard to make sure that I had as few regrets as possible as we cared for him following his diagnosis. I’ve dealt with enough death to know that regret that can’t ever be remedied is not something I want to deal with again. So I set out to do things right with my dad. And I did. I’m proud of how fiercely I worked to love him and advocate for him. But there wasn’t anything we could do at the end.

It’s not so much regret, I suppose, as just grief that I was so helpless to make his pain stop. Watching someone you love suffer for that long…it just stays with you. And most of the time, when I think of him, that’s what I think of. I flashback to sitting in the hallway outside of his room after about 48 hours of watching him writhe and moan, and just losing my shit while a CNA watched helplessly. I flashback to lying on his bed and whispering soothing things in his ear to try to distract him from the pain. I flashback to feeling so tired it made me queasy, and ignoring the death rattle for close to an hour because I just couldn’t make myself open my eyes and get out of the recliner one more time to check on him.

Here I am, three years later, still desperate to make his pain stop, even though he’s already long gone. I don’t know how to let it go. So for now, I’m just painting something that made him happy in the hopes that it’ll make me happy.

*Original available here. Prints and stickers and phone cases and t-shirts and such available here, here, and here.

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Is This What It’s Like?

17 Tuesday Jul 2018

Posted by in dementia, health, mental health, Uncategorized

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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

Alzheimer’s and Brain Awareness Month

08 Friday Jun 2018

Posted by in book, dementia, Fractured Memories, Uncategorized

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June is Alzheimer’s and Brain Awareness Month, and AlzAuthors is doing a raffle and book sale. As an AlzAuthors member, I’m offering my eBook, Fractured Memories: Because Demented People Need Love, Too, on sale on Amazon for only $2.99 and my paperback book on my website for 20%. To get the 20% off, please use coupon code AlzAuthors2018 through my website. I’m also giving away a free eBook as part of their raffle. Check the AlzAuthors group out on their website to get in on the raffle and giveaway!

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Drunken Black Whirligig

05 Thursday Apr 2018

Posted by in art, death, dementia, health, mental health, Uncategorized

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It hasn’t been the easiest of weeks. I’ve had a little too much down time. Appointments at the tattoo studio are few and far between since I’m still so new and haven’t developed a big customer base yet (hint hint: tell everyone you know to come see me!). So I’ve had a lot of time to think. That’s not always a good thing for me, because it leads to negative, cyclical swirling in my brain. It’s like my brain is a drunken whirligig of black and gray and more black and more gray. There’s an absense of color in my head sometimes.

I’ve had too much time to look at photos of the tattoos I’ve done and pick them apart and get mad at myself for them not being perfect. I’ve had too much time to worry about the probability that I’ll have to get a job soon since I’m not bringing in much money at the tattoo studio yet. When I’m not constantly distracted, I have too much time to focus on my body, which spends most of its time complaining about its own mere existence and threatening to quit. And when I get tired (which is always) and achy (which is always) and nauseated (which is often), and don’t have a decent distraction, I get little mini flashbacks of those final couple days by my dad’s bedside when I was so utterly drained and exhausted and ill and grief-stricken. And then, of course, I am again grief-stricken.

For some reason, the universe always chooses these moments to give me little nudges to keep me thinking about my dad. Lucky pennies left in the grocery store parking lot, dementia reminders all over the news, tv shows and movies where a parent dies, radio shows about grief…millions of little things that become an onslaught at a moment when I’m already fragile. I’ve cried. A lot. Which is embarrassing when I’m sitting in my tattoo studio room. Not the most professional. Thank god we have doors to close so I can hide for a minute or two and compose myself.

The thing that really gets me is that I’m still not missing my dad. I’m missing my demented dad, my sick dad. And I’m replaying his final days and trying to figure out how I could have spared him that pain somehow. I’m not thinking about him napping happily on the sofa with the cat, or hiking down the train tracks with him, or how he had a very particular way of eating yogurt. I remember those things, sure, but I can’t make myself focus on them. Instead, my brain goes to the hardest, most painful moments with him and replays them over and over. Those painful memories have become syndicated reruns, invading seemingly innocuous moments and leveling me.

I don’t know how to change my focus. I don’t know how to slow the whirligig down and add a little color. I keep trying to will my attention to happier things, like throwing colorful chalk dust onto all the ugliness, but the whirligig just blows the color all away again. I wish there was a way to scrub my memory clean of the dark stuff, because I know there’s color underneath. It’s there. It peeks out periodically. Sometimes it bursts forth and the blackness cracks and shatters and I can sweep it up and toss it out. But the black always comes back. And I’m okay with a little darkness; it’s familiar and makes the good stuff seem that much better. But lately it’s been overwhelming. I wish I could find some balance. Or maybe still have it not be balanced, but have the color on the winning team.

whirligig pinwheel

A Train For Dad

05 Monday Feb 2018

Posted by in art, death, dementia, family, gratitude, mental health, painting, sip and paint studio, tattooing, Uncategorized

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Today is the 2nd anniversary of my dad’s death. I still think about him every day. I still go through bouts of serious grief. I still picture those final, horrible, painful days with him as we sat by his bedside and watched him die. I still have nightmares. But, very slowly, I’m also starting to remember some small things from before his dementia, or at least in the very early phases of it. They’re not huge things, and there aren’t as many of those memories as I’d like compared to memories post-diagnosis. But they’re there.

I’m not going to lie and say that time has made this all easier to bear. It hasn’t. Life without my dad in it is lonelier. It’s a little less colorful. I feel less confident without him there to cheer me on. And I go through periods where the world seems bound and determined to remind me of him and make me cry. I want him back. Now. I want him to stop by and check on me, though I don’t even know if that’s possible. It’s hard not being a person of faith. Sometimes I think that his soul might be floating around out there, still tethered to mine somehow, like some big, transparent, elephant-shaped balloon. Other times that seems ridiculous. It feels like I’m looking for signs that aren’t really there. Or maybe they are.

In this time of transition in my life, I need him more desperately than ever to help confirm that I’m on the right path. Closing the paint and sip studio was hard, because it was a huge chapter of my life that he never got to see. And closing it reminds me of how many more chapters I’ll begin and end that he won’t be here to witness. But even if those chapters can’t be ours, they’ll still happen.

As we gear up to open the tattoo studio, I’m so sad that he’s not here to hug me and tell me how proud he is of me. I still need that paternal affirmation. So, I find myself doing little things to make him a part of things there. And that’s where this painting comes in. Long time readers know my dad was a huge train buff, so I created this painting for the tattoo studio lobby in hopes that I’ll feel like he’s taking part in this next phase of my life.

Steam Engine Wheels.JPG

Steam Engine Wheels 36″ x 46″ oil on canvas

Prints and other merchandise available here and here.

And in case you don’t already know: 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

Please Don’t Be The Reason a Unicorn Dies

08 Friday Dec 2017

Posted by in art, book, dementia, Fractured Memories, gratitude, humor, karma, kindness, Uncategorized

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Hey, you! Guess what? My book was nominated for an award! Guess what else? In order to win the award, people have to vote for me. Of course. Sigh. So, here’s where I ask you to do me a solid (I’m Gen X, forgive me for that little turn of phrase) and go vote at Rosie’s Book Review, and then ask all your friends on social media to do that same, because if you don’t, somewhere a unicorn will get an intestinal parasite and rainbow-poop itself to death.

Book cover 1

Have someone you need to get a holiday gift for? Check out a summary and buy a print copy here. Or read reviews and buy an eBook here (you can also buy a print copy here, but I make virtually nothing on sales on Amazon, so it’d be great – and cheaper for you – to buy them copies through my website).

The Gift of Words

04 Monday Dec 2017

Posted by in art, book, dementia, Fractured Memories, humor, painting, Uncategorized, writing

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I have words, y’all. Great words. And I put those words in a book. A great book. I also have paintings, y’all. Great paintings. And I put those paintings in the same book, which makes it not just a great book, but a fanfreakingtastic book.

You have friends and family, y’all. Great friends and family. You know what they need for holidays? My book (if you didn’t see that coming, I’m worried about you).

What’s the book about? Life and stuff – mostly life with dementia. But you don’t need to have experience with dementia to relate to the book. Check out a summary and buy a print copy here. Or read reviews and buy an eBook here (you can also buy a print copy here, but I make virtually nothing on sales on Amazon, so it’d be great – and cheaper for you – to buy them copies through my website).

Book cover 1

Cassie Bustamante’s Review

05 Thursday Oct 2017

Posted by in blog, book, dementia, Fractured Memories, gratitude, Uncategorized, writing

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This whole real estate thing is still madness, but I’ve had some time to paint and will hopefully be posting a new painting soon. Distraction is good right now, between the stress of daily life and the trauma we’re feeling as a nation following the shooting in Vegas. If any of you are in need of a little distraction, too, here are some book reviews Cassie Bustamante posted, including one of my book, Fractured Memories. And while you’re there, look around the rest of her blog. She’s got great decorating ideas and a project gallery.

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

Come Rain or Come Shine or Come Insecurity

18 Monday Sep 2017

Posted by in death, dementia, humor, music, sip and paint studio, Uncategorized

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I’m sad, guys. I don’t know why I’m sad now. I just know that I’m grieving my dad HARD right now. I know grief comes in waves. I think partly that this is because I’m in a period of real transition now that I’ve closed the paint and sip studio and things have stalled with the next adventure. Insecurity in my life isn’t helping. I think it’s also because it’s the time of year that I tend to get a depression flare. It happens just about every year around this time: my depression kicks it up a notch and my brain starts telling me I’m a giant loser and a miserable person who makes terrible, cowardly choices, and the future is very, very bleak. Again, insecurity in my life isn’t helping.

I’ve been having nightmares about my dad again. I say “nightmares,” but they’re not really scary – just really, really sad. I’ve woken up crying several times. And my dreams always share one feature: he always has dementia. He’ll be in different stages, but he’s never just him. In a dream a couple days ago, I was dancing to “Come Rain or Come Shine” with him, and for a split second, he was dancing and interacting with me like he was normal and healthy, and I thought, “This is a dream, but it’s a fantastic dream. I’ve got to keep this going.” I very rarely am aware that I’m  dreaming, but I knew it this time and I was desperate for it to continue. And then, in an instant, he changed and I kept grabbing his arms and trying to force him and my dream to come back. I woke up so bloody angry that I couldn’t even remember him as my fully functioning father in a dream. Why can’t I think of him that way? Why is it always him in some stage of dementia?

Two nights ago, I had a flashback. I was feeling really tired and a little nauseated and lay down, and suddenly I was convinced that I was crumpled up, crying, in the hallway outside of the room where my dad was dying. I could hear the oxygen machine going and smell the nursing home stink. I could feel the carpet underneath me and the wallpaper at my back. PTSD, anyone? Ugh. I just want to forget those final three, pain-filled days.

So yeah, it’s been a hard couple weeks. And Wednesday is my 40th birthday. How can I celebrate it without including my dad? How can he not be here for it? He’s supposed to be here for it. I miss him so damn much all the damn time.

But there’s nothing I can do about it. And since I’m in a depressive cycle, I need to focus on the good things. I’ll share one with you.  This is the pit I discovered when I cut open an avocado for lunch today:

avocado pit

How cool is that? It looks like a tree. Or Audrey II (there was that total eclipse of the sun a little while back…). Or brains. There is an excellent possibility that I chased the cats around the house with it chanting, “braaaaaaaains.” I may have also tried to chase S around the house with it and he may have taken it from me and thrown it out when I wouldn’t stop. It may also have attracted fruit flies and I may also being currently trying to get them drunk/kill them on cheap white wine and dish soap. Hey, it’s not the worst way to go.

Life goes on, come rain or come shine.

I’m Still Here, Sort Of

11 Monday Sep 2017

Posted by in death, dementia, mental health, sip and paint studio, Uncategorized

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It’s been a long time since I last posted. This is partly due to laziness, partly due to being totally overwhelmed by life, partly because it’s the time of year when my depression usually kicks things up a notch, and partly due to the hurricane coverage that has sucked me in. A LOT has happened over the last almost-month that I’ve been an absentee blogger. And as I got farther and farther behind on posting, the harder it’s been to make myself sit down and actually write. So, because I’m out of practice, this post may be total shit. Apologies in advance for shitblogging.

As you may or may not recall, our landlord for our sip and paint studio decided to be a total douchefuck and double our rent. If you missed that post, go back and read it to catch up before you come back and finish this post. I’ll wait (I won’t really wait. I’m not typing this live, as you read it. I shouldn’t have to explain this to you people.).

So, now that you’re caught up, you’ve probably figured out that we did, in fact, close the brick and mortar location. I taught my last in-studio class on the 19th, and then we had 2 weeks to clean the space out, during which I also had to travel to Colorado to train artists for a new sip and paint studio for which we were doing some consulting. ‘Cause there was so much time for THAT. Aaaaaaaagggghhhh! Cleaning the studio out to close down the business completely wouldn’t have been that big a deal, because we could toss, donate, or sell most of the stuff filling the 1400 square foot space. But because we’re still doing mobile events and offering consulting services, we had to keep a lot of it, which means that we had to find storage for it all. Double-aaaaaaaaaaaggggghhhh!

We had to go from this (which doesn’t even show the back rooms which were also choking on art supplies):

full AA class

To this:

empty AA studio.JPG

The room where-art-goes-to-die was already packed to the gills, and we need the space we have in the buildings at the haunt to make more fun things like the creepy trees. So we had to spend a few days emptying everything out of the already packed spaces so that we could put shelving from the studio into them and re-pack them even more. I had to throw out some old art, which isn’t a happy thing to do, but, realizing that they hadn’t sold since college and aren’t really representative of the work I now do, I said “fuck it” and tossed the paintings out. I also renamed the room from “the room where-art-goes-to-die” to “clusterfucklandia.” (I think maybe I’m German or Dutch. I keep combining words to make a newer, longer words. I must have germandutchitis.) A local friend also generously allowed us to store a solid crapton of stuff in the space above his garage, which saved us a whole heap o’ trouble. So we worked it out.

the room where art goes to die

Except for the desk. My dad’s desk. We’d brought it down to serve as our check-in desk at the studio after we put my dad into the dementia care facility. Try as we might, we couldn’t figure out a place to keep it now that the studio is closing, and it was insanely heavy and damn near impossible to get into the back of the pick-up truck for easy moving. It shouldn’t have been a big deal, but for some reason, I got really, really sad at the thought of giving it up. I’m not entirely sure why, but I think that maybe, on a subconscious level, it was a way of having my dad still be a part of a chapter of my life that he’d never see in person. He was contributing to the studio, in a way. And now here I am closing that chapter, and it feels weird that there’s an entire chunk of my life that he never knew, and as I move forward into the next chapter, I won’t even have his desk along for the ride to make him a part of it. It’s silly. I know. It’s just a desk, not my dad. But I just can’t help feeling really sad that I had to let it go.

And then, suddenly, everything was sold or donated or in storage, and I had nothing to do. Except think about that damn desk. And my dad. And now I’m grieving hard again. And, of course, things keep popping up to ensure that I continue to think about it: References on TV; lucky pennies; someone he knew, while growing up, contacting me out of the blue because they read my book; going to a friend’s wedding at which her father said to me, “You know, your dad’s band was supposed to be playing for this,” and at which she and her father danced the father-daughter dance to “What a Wonderful World,” which is what my dad and I danced to at my wedding; cleaning out old emails and discovering a bunch from my dad from his early days with dementia; and on and on. You get the idea. And now I’m reeling a bit and have kind of shut down and hidden from the world for the last little while.

But, as we all know and sometimes like to pretend we don’t, life goes on. And we have plans. All the plans. The best plans. But those plans are for another post. For now, we have bourbon. All the bourbon. The best bourbon. And right about now I’d really like to get all the drunk. But I won’t. I need to save some of the drunk for you, dear reader, because I’m generous like that.