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Tag Archives: caregiver

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

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Getting Your Book Seen

03 Saturday Jun 2017

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

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Hello there, glorious Fractured Memories readers!! As you all know, I opted to self-publish Fractured Memories: Because Demented People Need Love, Too, which means that promoting it is up to me. So I’m going to do some uber-begging. First, in order for books (eBooks, soft cover, or hard cover) to be seen on Amazon, they need to have at least 25 reviews. So far, I have 7. That means I need to get at least eleventy more (I’m good at art and writing, not math, people). That means I need help. That means that, if you read and liked the book, you could write a review on Amazon. That means that people would know the book exists. That means people would buy it. That means I wouldn’t have to live off of ramen noodles, which are terrible for my triglyceride counts. Instead, I could live off of cheese, which is equally bad for my triglyceride counts but so much tastier. It also means that I could support my bourbon habit, which sterilizes my insides, washing all those triglycerides out (yup, I’m pretty sure that’s how it works).

And now, another big ask: if you liked the book, tell someone you actually know! You can post about it on social media, or just tell a friend who you think would like it. If they’ve been a caregiver, they’ll be saying, “Me, too!” the whole time they’re reading it. If they haven’t been a caregiver, you’re prepping them for something that most of us will go through at one time or another with a parent or spouse or friend; or, you’re helping them know how to be a better support for the caregivers they know. Win-win! If they want to order a print copy (or if you want to order a copy for them), they can do so on my website at http://shop.emilypageart.com/ (I make more money this way than on Amazon, AND they’ll save a little money, too). If they’re not interested, try describing the book as “a staggering work of genius,” or “the best thing that ever was – EVER.” If they’re still not interested, they sound like pretty boring people and you should probably not be friends with them anymore.

Many, many (and a few more) thanks in advance!!

Don’t Forget To Have Some Fun

01 Monday May 2017

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

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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).

I Have a Face For Radio, So Tune In!

06 Thursday Apr 2017

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

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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!

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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).

Fractured Memories: Because Demented People Need Love, Too

02 Thursday Mar 2017

Posted by in book, family, Fractured Memories, gratitude, humor, Uncategorized

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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!”

To All the People Out There Tonight Who Are Comforting Themselves

23 Saturday Jan 2016

Posted by in dementia, family, kindness, Uncategorized

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Tuesday, the big move happened. My mom and a friend moved my dad’s belongings over to the skilled nursing center on Monday, and were supposed to be moving him over, too, but there was some kind of staffing glitch. So Mom moved Dad over on Tuesday, instead. I didn’t hear much from Mom about it, so I assumed everything was okay. Checked in a few times, and she was doing alright. The next day, she texted a picture of him lined up in the hallway, just like we’d feared they would and just like they’d promised they wouldn’t. But some of the staff from the dementia care facility did make an effort to get over to see him on their breaks. So there’s that.

I texted with her last night because she’s caught up in the blizzard hitting the east coast and I wanted to make sure she was okay. She was not. As she put it, it was killing her to not be there with him. We had lost power and I was trying to preserve my cell phone battery charge, so I couldn’t call her, but I spoke to her today (our power is back on, thank goodness). She said he seems really sad. He wouldn’t engage with her at all. No response to the normal cues that make him chuckle or give even a one word answer. Even the activities director who knows him from the dementia care unit said he seemed sad, so we know it wasn’t just Mom projecting her emotions onto him. Exactly what we were afraid of happening. I hate the thought of his final days/months being sad ones. I hope he’s not scared. He doesn’t deserve this. I feel like we’re failing him even though we checked out every option and I know we chose the best one.

Really, it’s not us who are failing him, but the powers that be at the facility who insisted we move him. The system is failing us. There are no words for how furious I am at them for doing this to him and to us. I hate how far away I am because I can’t be there to hug my mom and give her comfort. Being stuck at home in a blizzard just leads to too much time to think and worry. This blizzard is exceptionally bad timing, because Mom being able to visit Dad would bring both of them a little solace right now. And I can hear the pain in my mom’s voice. She’s been so incredibly strong through all of this, but I can feel her heart breaking. I want to wrap her up in love and protect her from it, but I can’t. We have to face it. And we will. But it sure ain’t fun.

Anyway, if any of you out there are the sending good vibes or prayers kind, my family could use it right now. Just put a little love out into the universe for my parents, please.

As a thank you, I give you this:

 

I’m So Royally Pissed Off At Dementia

08 Friday Jan 2016

Posted by in death, dementia, family, Uncategorized

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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.

It’s a Boy! (Okay, Not Really. It’s a Hernia)

22 Wednesday Apr 2015

Posted by in dementia, health

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Bit of a rollercoaster right here the last couple days. As mentioned in my last post, my dad is not pregnant, which is great. The x-ray came back negative, so we all breathed a sigh of relief and I went home. Then we got a call from the head nurse that he might have a hernia. So we scheduled a doctor’s appointment for him the next day, then commenced turning apoplectic at the thought that he might have to have surgery. How the hell do you keep a relatively mobile patient with dementia from getting up and tearing stitches and generally hurting themselves? What effect will the anesthesia have on him? Will the dementia get worse? Are we hastening his death by putting his body through trauma? I have to go to NY for a wedding this weekend – what if he has surgery while I’m gone and something happens? Needless to say, I slept nada last night. Spent the morning reminding myself to breathe and pacing around the apartment. Then my mom called from the doctor’s office, and the doctor said that while yes, it is a hernia, it’s not causing him pain (he doesn’t flinch when she pushes it back in or moves his legs around), so we’ll watch it but not do anything about it. So no surgery. Yaaaaaaay! It’s been about 5 hours since the office visit and I’m just now starting to breathe normally again.

Making decisions for my dad is tough, because he’s not verbal and doesn’t understand what’s happening and can’t explain to you what he’s feeling or not feeling. And deciding what needs to be done for quality of life in a way that doesn’t prolong his life or shorten his life isn’t easy. I’m glad we got to dodge actually making that decision this time around, but it was a reminder of what the weight of his life feels like in our hands.