As of this past April 8th, half of my life has passed since Dad’s accident. Every day from here on out, I will have spent more of my life with head-injured Dad than with pre-injury Dad, which is a jarring milestone for me. I worry that I’m losing memories of who he was before. But you know how you occasionally have dreams where you have conversations with dead people from your life and your dream self doesn’t acknowledge that they don’t exist anymore in the real world so it feels just like it did when they were alive? I occasionally have dreams with pre-injury Dad, and they’re the best. Even when we argue. I’m going to guess that folks with loved ones with Alzheimer’s have a similar phenomenon, wherein you have dreams of a person who’s still alive but no longer present.
In other news, folks with toddlers who ride in carseats and realize 5 minutes into the trip that they have to use the potty? I feel your pain. Take off the transfer belt, braces, shoes, tuck Dad in. Go to turn the fan on and come back to find him trying to get out of bed. Reverse procedure, take him to the toilet, and then repeat. Are we there yet?
Also, I think I gave Roxanne (Mom and Dad’s cat) a really lovely vitamin B deep conditioning treatment today for her fur.
Basically, it’s your standard weekend, only now in HD, which I plan to rant about later if I don’t get distracted.
Filed under: Uncategorized | 2 Comments
Tags: brain injury, Dad, TBI
For some reason, putting things in order makes me happy. Does this mean I’m an organized person? No. My place is a series of small piles of detritus. (Disney discovered a new tunnel through some laundry this morning. I was impressed.) However, being able to put tiny sections of my life in order floods me with dopamine.
Take, for instance, my nail polish collection. It now lives in a set of medicine cabinets on the living room wall. One day when I was buying a polish, the best friend said, “You have that shade.” I denied it. We were both right. I did have that shade. Only from a different company. Witness my favorite blues. All but Gumball by Orly (the middle one) are basically very slightly different versions of the same aqua.
Now I swatch every color I buy. Useful in a few ways:
- I get to see the polish against my skin, which is good because I take beta carotene, and occasionally I accidentally turn Michael-Kors orange and colors that seem normal look weird on me.
- I can hold different colors up against each other to see what goes well together.
- I could theoretically take my palette with me when I go shopping so I don’t buy the same shade again. This never happens. That would require a level of organization I’m not yet ready to commit to. Also, I really, really like that blue.
If you also need this kind of dopamine in your life, I get mine from TransDesign. They have a dozen different options.
Filed under: Play | 1 Comment
Tomorrow’s the 21st anniversary of Dad’s accident. For those of you who don’t know, my father was in a motorcycle accident right after I got my Bachelor’s degree. He was hit by at least one car. He broke everything. His lungs were shredded. But the worst bit was that he had a stroke which resulted in the loss of a large section of his brain. Most brain function recovery happens in the first 5 years. 21. Now that we’re all on the same page….
Yesterday the annual recap post would have been different. But today the pharmacist managed to give Mom’s flu shot in her shoulder straight through her muscle and into the bursa. Result? Mom has Shoulder Injury Related to Vaccine Administration (SIRVA). She can’t lift her arm. She’s in horrific pain. I finally gave her morphine an hour and a half ago, and she’s fallen asleep.
Mom has a really high tolerance to pain, so when she does have it, she freaks out. And she deserves to. But when Mom freaks out, Dad loses control of his bowels. Fortunately, he’s in diapers 24×7 at this point, so this isn’t as unpleasant as it could be. Somehow, she’d managed to clean him before I even got to their place from work.
Move forward several hours. I got Mom upstairs in bed and Dad downstairs and fed. When Mom’s pain got severe again, I decided I’d run get some lidocaine from my apartment and feed my cats. I asked Dad, “You need to pee?” “Huh?” “Do. You. Need. To. Pee?” “No.” “Okay. I’ll be back in an hour. Don’t get up.”
Naturally, he got up. He needed to check on Mom. He’s still that good guy he was 22 years ago. On the plus side, he didn’t fall, because Mom had to come downstairs to walk him back to his chair. Someone has to be holding on to him at all times when he stands because he loses his balance and forgets how feet work. You know how toddlers have that stage where they go limp when they don’t want to do something? Now imagine a 180 lb. man doing that. We have a transfer belt on him whenever he’s awake. It’s made dealing with it easier.
It’s sweet that he loves her. It’d be better for her if he’d listen. Or remember. But I can’t get mad at him for either of those because he can’t.
At times, he reminds me of a toddler. Other times, he reminds me of a petulant teenager. His oxygen saturation is always low, but when it drops below 89, he’s particularly prone to peeing on the floor instead of in the toilet or falling over. So we sometimes use a pulse oximeter on him before we let him walk. Sitting incoherent Dad is easier to deal with than standing incoherent Dad, heading for the Earth at 9.8m/sec. And he gets in these phases where he says, “No!” and flings the pulse oximeter across the room. Fortunately, these spells are few. But it reminds me so much of a teenager’s “You can’t make me” attitude. It’s got to be hard for a 70 year old to obey his 40 year old daughter.
How do you deal with that? With a petulant toddler, you can manhandle them out of a situation when they’re not yet reasoning properly. With a teenager, you can let them go and assume they’ll learn the hard way whatever it is you’re attempting to protect them from. We can’t reason with Dad. We can’t manhandle him. And he doesn’t have the ability to learn. So I really have no idea what to do. Maybe folks dealing with parents in dementia have advice?
I was reading a book about folks with dementia, and the doctor pointed out that every time your loved one has an incident, you reset the bar, only you put it a little lower. You continue to lower your expectations and cheer at the smaller and smaller achievements. And the only way out of that cycle is death, the patient’s or the caregiver’s.
Mom takes care of Dad 24x7x365. I come over many Saturdays to do the morning routine and give her a 6 hour break from babysitting and bodily fluids. Fortunately, my friend Dawn convinced me to get her to hire caregivers, so we have 3 or 4 folks trained now who can give her time off during the week. This is good for me because it means I don’t have to ask off of work every time Mom wants/needs to leave the house. And I get to go to the Renaissance festival. But I still don’t know how she does it.
This is the annual State of the Brain Injury address. Nobody asks for this. My folks didn’t ask for kids, and they still changed my diaper for years. I can return the favor. I’m not looking for applause. I just know that reading the honest accounts of others affected by brain injury has been useful for me. So here’s mine.
It doesn’t get better. You learn to deal with it better. And then you lower the bar, adjust, and move forward.
Filed under: Uncategorized | 5 Comments
Tags: brain injury, Dad, TBI
For folks who haven’t met me, I like to spend my vacations with Best Friends Animal Society in Kanab, Utah, the location of the largest no-kill animal sanctuary in the United States. So last week I flew into Vegas to kickoff the annual escapade. Spent the first night at The Cromwell, which is part of the Caesar’s chain. The decor was posh. The location was perfect. I’d recommend it for the service, their driver, and the free espresso, plus the easy in-and-out. It isn’t the best place for folks who want to try out different restaurants in their hotel, since there’s only one.
Before leaving Vegas, I got to grab a fancy burger and catch up with an old friend, as well as stock up on bath bombs from Lush, because a soaking tub is a nice touch when you’re covered in cat spit and allergic to it. And the new place in Kanab, the Canyons Boutique Hotel, had a room with a tub that had my name on it. (And a fireplace, too, but it’s September. Also, they have a restaurant downstairs, which I ate at once. It was nice. Hot breakfast would have been nice if I’d managed to get up early enough to enjoy it, but I was always scraping in just under the 8:15 check-in wire at Cat HQ.)
Got into Kanab in time to go on the tour and take a spin around the gift shop. Drove out to Zion that evening, which is just 20someting miles away. Then I realized that pretty as the rocks were, I’d rather be back in the hotel getting some sleep. Which was much needed. My Fitbit told me I averaged 6 1/2 hours of sleep each night that week. I could be doing relaxation wrong.
Quincy Room 2: Where the boys are
Spent my first day volunteering in Quincy Mo, catching up with some of my lobby favorites like Snowflake and Duke. When I was ready to clean, a caregiver suggested I try out Room 2, which is chock full of alpha male cats. They’re a little more feisty with each other than most rooms, and you have to make sure everybody who wants attention gets it, but mostly they’re big ol’ loverboys. After I’d been in there a bit, I was trying to identify one of the cats and looked up at the board and saw… a card I’d sent after my visit in 2009 – a photo of three boys who are no longer in the room. Whichever caregiver picked Room 2 for me obviously chose well.
After lunch, I went back to help out with dishes and laundry and just generally spread the love around. When there was one more thing to attend to than there were caregivers, I got to step in and feed Duke, which was a wonderful, messy experience. Duke’s a kitty with cerebellar hypoplasia who lives in the lobby. For folks who remember him from my previous visits, he’s still just as independent, but now he’s happier and yells at you less when you try to help him. I also fell in love with Spud, a blind, neurological kitty who “oversaw” my laundry folding. (I had no idea he was blind until a caregiver told me. He died while being neutered and suffered some brain damage after being revived.) So yeah. Quincy and its magnificent kitties will remain on the Must Do list for the foreseeable future.
Silva Battista hosted that evening’s Welcome Wagon, which focused on their Katrina rescue efforts. It was amazing to hear about it all from a witness. It hadn’t struck me that street signs would be underwater, so it was interesting to hear the logistics of how they’d direct the boats in New Orleans by using satellite maps back in Utah.
Bent on Benton’s
I have a special place in my heart for Benton’s House, another of the special needs buildings, so that was Thursday’s agenda. While the caregivers were doing meds and special feedings, Maury and I went out for an hour long walk. You’d never know he couldn’t use his back legs when he got to the sanctuary. I think he would have stayed out all morning, staking out lizards, if I hadn’t finally toted him back to the lobby.
Got to do a stint as Dilly’s maid and meet all the new cats in Niblet’s. Last time I visited, we’d managed to get shy Grover (nee Attila) down from the rafters with some Temptations. He’s a little old man now, but his posse of “huns” still loves him, and he can still be persuaded with promises of plunder (treats).
After lunch, Chauncy and Slidell monitored my dish washing skills. (Their advice? Moar pettins, plz.) I got to clean a bit more but mostly spent the time socializing with some shy cats in each of the rooms. Went back to say goodbye to Dillymonster, who didn’t have to swat or growl at anybody the whole time I was in there. Good to see everyone’s giving the diva the respect she deserves.
After finally meeting an imaginary friend, I spent my final shift picking the brain of Mike at Colonel’s, whom I’d met on my very first volunteer shift back in 2008. He had some great advice on handling feral cats for my Sunday shifts volunteering at the spay/neuter clinic (chiefly: do it as little as possible). I learn all sorts of new things every time I work at Best Friends, and sometimes months later I realize I’m putting them into practice. These I’m putting into place next Sunday.
The landscape is beautiful; the people are wonderful. There’s something special about being in a space where everyone’s there to make the animals’ lives better that makes Best Friends a magical, unforgettable experience.
Check out the album on Flickr
Filed under: Play | 2 Comments
Tags: Best Friends, cats, Las Vegas, vacation, volunteering
Back in April, I started seeing ads for a new season of a TV show coming out in Japan: Neko Zamurai. I snagged what’s probably an illegal sub off of Amazon. Finished the first season last weekend, and I adored it.
First off, it’s a period comedy, something we don’t really do in America. Well, maybe something like Happy Days qualifies. But it reminded me of Three’s Company. It’s set when samurai were falling out of favor and our hero, Kyutaro Madarame, is a ronin who can’t find work. A guy who’s basically Mr. Furley hires him to kill a cat he thinks is possessed. No big spoiler here since this is the premise of the series: our hero can’t do it and instead takes the cat in as his own.
There’s a Janet who lives next door, who’s sweet but obviously not a romantic interest, who is in on the plot and helps hide the rogue cat. There’s sort of a Chrissy character, too, except she’s wise. She’s the local cat expert and also in on it. Also? Madarame has his own theme song which he occasionally sings to himself. You’ll be singing along by the end of the season.
Also, Disney approves of this show. Three different cats play Tama-No-Jyo, and occasionally when one would talk Disney would sit up and respond to the TV set. So apparently she speaks Japanese. Who knew?
You can find the first episode on YouTube. I’m putting a link to one I found here, but it’ll probably stop working since I’m sure it’s not supposed to be up there. If it sounds interesting, feel free to ask me to borrow the Season One DVDs. I’ll be getting Season Two and the movie when I can find them!
Filed under: Play | Leave a Comment
Stacie got me a copy of China Miéville’s Perdido Street Station for Christmas. The fact that a month after I finished I’m still passionate about it says something. Especially with fiction, I often treat it like food. It’s an enjoyable experience, possibly worthy of a Tweet, but basically I consume and move on. Not so much with this book.
I’m usually more of a fan of cold and dry futures (melancholic). Cyberpunk-style. This future is warm and moist. Organic. Squalid. Stinky. It took me a bit to settle in to it, but it’s so rich, it will work its way into your brain if you like world-building.
Miéville really loves language. He calls forth the perfect word for any situation. Tip for those who plan to read it: if you come across a word you don’t know, look it up right then. You’re going to see it again. And you’ll think to yourself, “Now what did that mean again?” And then when he hits you with it the third time, you won’t even slow down. This reminds me that I need to contact my condo association about the desquamating paint on my balcony.
But the ending was unsettling. The only other novel I can think to compare it to is Toni Morrison’s Song of Solomon, where I finished the book and then spent some time just sitting, assessing my feelings about it. And then assessing my feelings about those feelings. Anybody else who’s read Perdido and knows what I’m talking about, come talk with me. You can give me a shout-out, but don’t discuss it here. Want to avoid spoilers for anyone who’s been meaning to pick it up. Let them feel those same raw feelings we felt. That’s a worthwhile part of the experience of this book.
Filed under: Play | Leave a Comment
Tags: books, fiction, perdido street station
This is my new favorite spot in Occoquan. Obviously this picture was taken a few months ago. I’ve started a new blog entry at least half a dozen times since summer, but I haven’t gotten around to hitting the Publish button.
Annnd that’s because of how busy my August through November is. The end of August starts the Maryland Renaissance Festival, where I am every weekend except the one in September where I’m volunteering for Strut Your Mutt. Right before Halloween the festival closes, and I’m in last minute costume preparation mode. Come November, I start sliding like a quarterback, and then work tackles me hard, despite the fact that I’m already down, because, you know. Retail. Holiday. Man, that’s gonna leave a mark.
And in December, I get to surface again. So here are some stream-of-consciousness updates that I might have made over the past few months, if I had things a bit more together.
- September 15th this year was the 20th anniversary of my dad’s motorcycle accident. At some point in the next year, I will have lived with post-injury Dad for longer than pre-injury Dad. That makes me wistful, but I don’t know why. Post-injury Dad and I get along better than pre-injury Dad and I did, which makes me even more sad. (For other daughters of brain-injured fathers,
He Never Liked Cakeby Janna Leyde was really valuable for me, reading about her working through her relationships with her pre-injury dad and post-injury dad.)
- Sometimes I have “if I’d only” moments, which I know are pointless. Everybody has these. I read something in The New Yorker earlier this year that struck me profoundly. When you’re in a situation where you believe you’ve experienced the worst possible outcome, ANYTHING you could have done would have been better. Sure, if you’d left work 15 minutes earlier, that horrible thing might not have happened, but, by the same token, if you’d juggled geese, it also might have improved the outcome. Which is ridiculous and reveals the flaw in this sort of logic. Hopefully. I figure if it might help anybody a little with a downward spiraling thought process, it’s worth sharing.
- Got to see Henry IV parts 1 and 2 in repertoire at the Shakespeare Theatre. I adore the Henriad (also, I like saying “Henriad”), and I’ve always thought that IV Henry 2 was my favorite of the bunch. Seeing them back-to-back made me realize that 1 is all action and 2 is all thinking about the repercussions of the action. Seeing all 3 in one day would probably kill the actors, but it’d be quite spectacular. On a related note, it was lovely to see Stacy Keach as Falstaff and appropriate considering his Richard III at the Folger ensconced my love of Shakespeare almost 20 years ago.
- This came up in my brain again last weekend, because The Walking Dead is using “The Parting Glass” in one of their commercials. I am all about using the word “joy” in the chorus in almost all contexts, but these are Hershel’s girls. They learned the version with the word “God” in it, I promise.
Okay. I think that’s it for now. Did I miss anything?
Filed under: Play | 1 Comment
Tags: Occoquan, shakespeare