Monday, July 29, 2019

Caregiver's Vent

It's been more than half a year since Mom's cancer diagnosis, surgery, month-long hospital stay for complications and non-stop caregiving.

I have started a handful or so blog posts, only to give up or not like the rambling-venting bent they (my brain) veered off to.

My dad and I have been caring for my mother, in various and increasing ways, for decades. As I've shared here, the last few years up until last fall, have been a roller coaster. Our ability to do things changed, our worries mounted, and our downtime between issues lessened. And all that pales in comparison now to the amount of care and supervision she needs now.

At every point she seems to be improving, she crashes and seemingly slides deeper into a pit we can't pull her out of. At the moment, she sleeps most of the day, refuses to eat, and is basically kept alive via her feeding tube - an ordeal to keep access to is several chapters of it's own in a novel that now even my siblings are saying I will have to write. I can't help but wonder if she's willing herself to fade away - and succeeding.

I've never been a sparkling conversationalist, but if you liked to discuss a bizarrely broad spectrum of science, philosophy, historical anecdotes, and other random topics, I could and have talked til the sun comes up. Now, I assure you, I am the queen of making conversations short, uncomfortable, and disgusting. Would you like to know how my day is? Before you ask, look deep into your heart of hearts and ask yourself how much you can handle hearing about the contents of a person's stomach spilling out through a hole in the abdomen you can tolerate. So I get why no one is really looking to me to fill in conversational lulls. Also, most people cannot tolerate any kind of insight into death, mortality, the failing human body, or even the thought of their own parents potentially needing care and planning at some point in a distant future. If we can't have honest discussions about racism, sexism, religious intolerance, and things like an increasingly dystopian-level of governmental insanity, how in the name of Big Bird are we going to address what it's like for an increasing, but isolated, group of people who are struggling to care for their loved ones?

Understand that my bullshit tolerance level for the kind of crap, self-indulgent, narcissistic idiocy no longer exists. If you interrupt me to tell me you know what it's like (but mostly to takeover the conversation) because of a loved one being cared for by somebody else that you never see has gout in their big toe and it's excruciating for you...to hear about it in your bi-weekly phone calls, then you need to fuck right off. A short pier. Into chum filled waters. And I hope your private parts are fill with paper cuts for that extra special few minutes of salty, salty water.

Because I'm exhausted. I don't have the ability to try to make you feel better about my situation. I used to be that person, that people-pleaser. Oh, I hope I haven't made you feel.. an emotion you find uncomfortable... because I'm dealing with something you find distasteful. Let me just bottle it up, swallow it down, and plaster a smile on my face so you can be all comfy cozy with your organic tea and fair trade coffee and complain about how the real problems in the world are people in a different social class than you who think and shop differently than you do. All while you snap photos of your pesticide-free, gluten free, good fat-having avocado for 2 of your 6 social media accounts. While you make fun of people for doing the same thing.

I don't have the patience for, in no particular order: hipsters (in any variation, at all), spoiled brats, people who hate living in Florida (you didn't go to sleep in a townhouse in Boston or a ranch in Wyoming and wake up in a trailer park 15 minutes from a Publix grocery store through no fault of your own & if wherever you came from is so wonderful, why aren't you still there and why don't you go back?), 80% of millenials, 75% of Gen X (conservatively), 90% of Baby Boomers, 99% teenagers & middle school children, 85% of whatever generation I'm supposed to be a party to, 100% of people who complain all.the.fucking.time, screaming and tantrums as a means of political debate.....and I'm sure the list goes on, but the last of my functioning brain cells for the day are all kinds of worn out.

As I whine about the toll caregiving takes, understand that no matter how well something turns out, from constipation to wandering out the door, ultimately the end of this is death. My mom isn't going to grow out of this, grow up well, go to college, etc. That's all behind her. I'm not putting in the time, I'm not putting in the heartbreak and the strain (& the disinfectants) with a hope of a brighter future for her. Every day is ultimately another day of decline, whether it comes after a few months or a few years, it goes the same way. I'm witnessing decay, with a hope that she hits some kind of peaceful crossroads instead of pain and agony. Because that's all I've got. That and vacation/relocation home shows at 1 in the morning as I wait to take her to the bathroom again.


Courtesy: Caregiver Connection



Thursday, February 7, 2019

Daily Triage

It's a daily chess game, the care and keeping of the magical creature also known as my Mom. 

After a month in the hospital with surgical complications & a lack of will to live (among other things), she's back home.

For about a week or so, my Mom was what I'd call herself in the hospital. More or less alert, missing a great deal of time, but able to have a conversation in a way she hasn't in probably more than a year. And yes, she still obsessed over things, still slipped away mentally from time to time and her short term memory was practically non-existent, but I had a Mom. 

And I still had to be careful with her. I've been lulled into a trap by this persona before, something dark lurking underneath, waiting to use my lowered guard against me. But I still tried to take it for what it was and interact with her more than I've been able to in a very, very long time. 

Then she finally came home. And all bets, all gloves were off. Within the first half hour of being home, while I tried to get her clothes changed and get her in bed, she told me I was a mean son of a bitch. So, you know, warm fuzzies all around. 

Mom, as I'd like her to be, hasn't reappeared. The Mom I've been experiencing for the last few years, a sort of hybrid between The Grudge ghost and the twins from The Shining, that's who resides with me once more. 

She remains unwilling to want to thrive. She outright resists survival when it comes down to it. Some wounds can't be healed with antibiotics, gauze, or stitches. But still, for lack of a better plan, we try to keep her going. We've had several conversations, our core family members, about what happens next. It's time to be realistic. One of my siblings, after a particularly stark conversation when the reality of where she was at at that particular time hit them, said it best when they said, "When did things get so damn complicated?" 

Each day we play Mom's version of chess where she tries to outmaneuver whatever we're doing to keep her going. And then we regroup and try to dig a new trench and work around her blockade. 

Thursday, January 10, 2019

Life Is A Highway

So....long time, no blog.

One of the main reason I started this blog was to work on how to write about the story of my mom and I, and perhaps a more overarching idea, how to document her story of a life that was, in my estimation, bitterly unfair.

A few months ago, Mom was diagnosed with not one, but two kinds of cancer. Rare kinds. Either one on their own are usually enough to send people on a quick, bucket list-fulfilling quest. The super short version is surgery handled this current round of tumors, but there's a fairly sizable risk that one of them could return with a vengeance. If it does, that's probably a make-final-arrangements-and-keep-her-comfortable scenario.

But embroidered in the super short telling of a several month roller coaster ride, is a woman who has considerable anxiety and panic where doctors and medical procedures are concerned. So we have been waiting for a psychiatric fallout once she started recovering.

It's currently a moot point of whether she has or hasn't had that fallout, because she's back in the hospital. Despite a couple of hiccups during surgery, she came through like a champ and was recovering just about as well as anyone over 65 can recover from serious, major surgery. Her first post-op went well, everyone pleased with how she appeared to be healing.

So everything was all okay, as far as things ever are for my mom, until suddenly everything wasn't. We're talking several days in the ICU.

So I'm writing in a room with a view of a major metropolitan area from a hospital tower, spending 45 minutes to an hour in traffic each way to make sure Mom's getting as much of what she needs as I can manage. One of us, myself or my dad, leave home before dawn so the trip doesn't take twice as long in rush hour traffic.

Realistically, we don't know what comes next. She may continue to improve, even if it's at a snail's pace. The older you get, the longer it takes to recoup. My battered inner optimist champions this idea. She may improve to a point but never get back to where she was. And, my heavy duty layer of pragmatism warns, this could be the best she ever is and it's a downhill slide.

People ask what would help, what do I need? I've asked that to other people countless times. "What can I do? How can I help? What do you need?" My stock answer tends to be, we're okay, I'm okay. I've revised that, though admittedly it's no more helpful an answer. I don't know. I honestly don't know. Don't forget I exist, maybe? Understand that when I'm not arguing with doctors, or cleaning up my mom instead of the folks getting paid to, I mean to check in and ask how your lives are going. I'd love to have news from the outside world...maybe. Some kind of sense of normalcy. Redacted of over dramatic bullshit, because I'm just too tired. Or just, like, a funny meme or something. I mean to check in. But I remember at like midnight or 5 AM. I mean to try to keep some kind toehold in the rest of the world. And then I get out of here and I've got to pick up paper towels. Or figure out dinner. Or go to bed and start all over again the next day, slightly rested and yet totally exhausted. What do I need? A lot of things, but nothing I can currently figure out. Which is probably true of the people who I've asked in the past.

Aside from getting good news (and trying to ignore whatever daily setback happened) and aside from dogs overjoyed that I've returned to them once more, one of the most cathartic parts of my day is turning up a good song after I've merged onto the interstate and acting like I'm in the band.

Wednesday, September 26, 2018

The Umbrella Rabbit Hole

The last couple of years have been pretty light on traveling outside of my home base, but this year sure has made up for it. As we slide into fall (my absolute favorite time of the year), I'm on another unexpected trip. If my 2018 were to be a book title, it would be something along the lines of The Rapidly Aging Introvert and the Year of Last Minute Travel. Hopefully an editor of some variety could spice that up.
So I'm sitting in a perfectly nice hotel that caters predominantly to business travelers, sipping a cinnamon-y latte with my laptop open and various notebooks and pens at the ready. Just waiting for housekeeping to knock on my door and causing me to jump six feet out of my skin. Expected or unexpected, I've got a hell of a startle reflex. 
What I don't have, in addition to patience, inner peace and a pleasant outlook on the state of affairs in the world, is an umbrella. And in true, admittedly boring, storytelling fashion, it's the reason I have the spicy latte to sip instead of whatever is neatly sealed in the foil packets nearby. 
Err...not quite.
I am within walking distance of the whole reason I'm staying in the hotel, in the middle of a large business/technology district outside a major metropolitan area. Exact specs aren't as important as knowing pretty much anything I could need is mere steps away. But I'm a hermit-y, creative type, so I prefer to burrow in and be left to the vivid imaginings in my own head. Coffee, gyros, crepes, hardware store, tacos of epic proportions, alcohol of even more epic proportions, curry... Anyway, I'm set. But my husband insists on walking to his destination (as noted earlier, it is a comfortable walk away) so I have the car to venture out. 

My husband, bless him, likes to venture out. And yes, I have my moments. But most days at home, I end up at a pharmacy. Or two. A grocery store. Or three. Library. Doctor's office. Hardware store. Lab. The list is endless. And as I mentioned, I've got my laptop and notebooks and beloved fountain pens. All with me. Ready to be used without interruption. Once housekeeping is on their merry way. No dogs to take outside. No meals to fix. No medicine to make sure gets taken. No older parental unit bitching about every.little.thing.from.bugs.to.song.lyrics. *deep, steadying breath* So I'm hoping to burrow in. I'd like to not have to surface until I'm not sure what day it is and the writing is so convoluted 115% isn't usable. Writing so bad, I've go to undo previously usable material. Why would I need the car?
But we hates the natural light and the peoples. So many peoples! We wants to be left alone. Wants! Needs! Wants to be left alone, in our hole, to write. *hisses*
There, I've peeled back the outer layer of a writer. It is what it is, folks.  

It's delightfully dreary weather today, supposedly raining from late morning through the evening. Perfect for writing. But my husband, well-meaning to be sure, doesn't want to take the car (and leave me in peace). I offered to drive him if it was raining if he kept insisting about the car. 

"Or, you could grab the umbrella if you're intent on getting your walking in." There was pause. The kind of pause you can practically touch. You know this pause if you've been married long enough. In my marriage, it's usually broken when the one who pauses chuckles or giggles somewhere between timid and aww, shucks. 
"There's no umbrella in the car."

No umbrella? There's always an umbrella. We used it a month ago to keep half of each of us dry. Again, as most long-married couples know only too well. The idea of sharing an umbrella in the rain never quite matches reality, at least when it's tropical deluge. 
But as soon as I asked where the umbrella was, I had a pretty good idea why there was no umbrella in the car. When last used to fair to poor rain defense (seriously, it was raining sideways) my husband noted two pieces of frame had broken. It still opened and closed just fine, but its days were numbered. Somewhere in the month since we'd used it, he'd decided to bring it in the house to swap it for another. Except the back half of the swap still has yet to take place. 
You always forget something when you travel, and I told him, better the umbrella than medicine or underwear. My husband has an incredible memory, so forgetting things bothers him. Meanwhile, I barely remember my own name, so it wouldn't even register on my radar. He agreed with me and relaxed. Then insisted I needed the car. 

So after breakfast, where he toasted my English Muffin and I spread cream cheese on his bagel, I drove him literally around the corner on a lovely gray fall day. He suggested I grab my writing gear and head out to the coffee shop while I stifled the urge to tell hims to shut his filthy, treacherous mouths!! *cough* I politely declined. But after I dropped him off I added an extra 30 seconds to the return trip by coasting through the drive thru coffee shop, my hotel the view immediately before me as a bored barista-in-training handed me my cup. 
I've made it through 7 handwritten pages trying to leak the fluff out of my head so far this morning. And clearly, if you've made your way through this blog post, you've discovered 7 pages has left plenty of fluff that still needed draining from my brain. And now that my brain has been somewhat vented, I hear the approach of housekeeping just as I'm ready to settle in on my work in progress...

Tuesday, September 11, 2018

Library Evolution

The only blog prompts that captured my attention (Do you really want me to list my 3 favorite squash recipes? Do I even have that many squash recipes?) had to do with libraries. But I didn't really see a point in detailing my last library visit or describe my local library. What did come to mind was how my library visits have changed over the years.
I have solid memories of visiting my local library when I was learning/had learned to read. It was a building situated on the Intracoastal Waterway, barrier islands and the Atlantic Ocean just beyond. I have a vague sense of the building smelling of worn carpet, metal shelves, old paper and damp - in the best way possible.
Before I could read books on my own, I'd carefully examine the shelves closest to whatever my dad was looking and found a treasure early on: a book on the art of Walt Disney's animation. I'd flip through the book, practically as long as I was tall, and beg whatever family member walking by to read the pages to me. Reading technical drawing info and the minutia of movie making to a preschooler who was really wanting a story did NOT make this book a treasure to anyone but myself, no matter how many times I'd check out the book. At some point, my parents wouldn't let me take it home anymore so I'd visit with it at the library until one day its hold on me was forgotten.
Instead, I'd pour through the offerings of the children's section. I have a visceral memory of a Dr. Seuss compilation, from the texture of the pockmarked cover to the shade of green ink used in the illustrations. I could, if the building and section were recreated in exact 1980's detail, take you to the exact spot on the shelf where the book resided. Even once I outgrew Seuss, I'd occasionally check to see if it was in or not. When not visiting with old friends, I'd start from one end or the other of the children's fiction section and carefully search for my next favorite read. By the time I aged out of the children's section (a heartbreak I'm not sure I'll ever be entirely over) I had gone through every ghost story I could get my hands on and found the adult's sci-fi/fantasy paperback section a poor substitute.
The library of my early teenage years, several hundred inland miles away from my wonder-filled childhood library, was all about exploring. We'd go as a family still, but now I could walk to the library after school. Alone, I'd go through every section to test out subjects and authors completely unknown to me. Books on slang and word origin, foreign language, twisted family tales (Did the librarians have a clue what happened in the V.C. Andrews books they put on prominent display?!), sinister horror, and yes that most taboo of all and seemingly scary subject matter for the average American white male, romance novels. In the second story of that library, a simple building from any small town USA Main St, I read about things that practically curled my hair. It's really no wonder I've read so few "classics" - how do you get through a book about a man obsessed with a whale when you could be reading about anything lurid, horrific, or like, just obsess over dream dictionaries. Totally.
Gawd, I think I'd rather chew off my own ankle than be a teenager again.

My adult library-going is the composite of them all. I can still safely try out new-to-me topics and authors free of charge (Funding the local public library? Take.my.freaking.tax.dollars!) and if I see a book on the shelves I've read, I still kind of have a "hello, old friend" moment. But more often than not, I've searched for and requested the books I want to read, only coming in to pick them up in one shot and return what I've (hopefully) read. I don't linger over the shelves, instead browsing on-line. I get seemingly endless suggestions from outside sources and come in with a list. I do cast a longing glance at the children's section and reminisce about the glide of the card catalog when I pass by the computers.

Sadly, I learned earlier this year that my first library (building and all) is gone. I had such a strong reaction to this, you'd have thought someone died.

Friday, August 24, 2018

Whatcha Watchin'?

Scraping the bottom of my mental barrel for blog posts, I decided to do what should have been the obvious thing and try out one or two of the many blog prompts I've collected. Something besides talking about a bout of kidney stones (again) followed by sinus crap, then a heaping helping of mom drama.


The most recent movies I've watched that are new-to-me (admittedly I'm prone to being sucked into my 9 billionth viewing of such favorites as Dirty Dancing and Clue):

  • My Cousin Rachel, the most recent adaptation of the Daphne du Maurier novel. I didn't love it, but I am a sucker for zoning out and just enjoying dark and twisty atmosphere. 
  • Goodbye Christopher Robin, a biopic of the man and boy behind a special honey obsessed bear. It was interesting, but not something I'd need to watch again and again.
  • I, Tonya, another biopic of the trainwreck of a once Olympic skater. Ridiculously entertaining performances of events I remember happening.
  • Fallen, an adaptation of a YA novel I read eons ago for my niece. I had no idea it had been made into a movie until stumbling upon it on a streaming service. I cannot recommend it for anyone above... I don't know, 12 maybe? And even then, read a book instead. 
  • Hello, My Name Is Doris, the outlier of my recent movie binge, a quirky, romantic dramedy. Maybe it's the charm of Sally Field. Maybe it's the character she portrayed - an aging woman who cared for her recently deceased, unstable mother and is now trying to live a fuller life. It's awkward. It's adorable. 

Saturday, August 18, 2018

Like stars

Where to start? It's been a busy year. I've traveled so much, some trips last minute and unexpected, my head can't quite get settled into a "normal" homebody routine. 
Despite enjoying travel - even making the best out of a trip back to my family's home turf for a funeral - all of the coming and going has added to a kind of transitory vertigo I'm experiencing. And I think there are just times in your life when you feel off kilter, things changing and shifting around you to a degree that you can't help but be aware of it. 

Loved ones, both family and friends, are having their fair share as well. Job searches, new homes, extensive travel, explosive career developments, death in the family, births, etc., there's a lot shifting around my tribe. Life's like that. Long periods of relative same and then somebody starts shaking your snow globe like their life depends on it. 
Eh..more like this:
That's more like it.

This morning an expected perusal of social media memories led to the discovery that a friend I went to school with passed away. 

Did you know there are now "legacy" & "memorial" settings you can enable for social media in the event you die? That's my something new I learned for today. A small but insistent pop-up window that totally shifted my headspace this morning. 

We didn't have solid friends in common in school, though I was first-name-friendly with some of her usual crowd, and we certainly didn't have people in common as adults. But she is one of the few people from an area I didn't live in for more than a couple years that I'd call a friend. Talk about the future, babbling on the phone, share clothes with. So a social media pop-up hit me in the solar plexus and sent me on a web search to confirm what I hoped was a bad joke or wrong click. 

She looked so happy in the wedding picture they used for her obituary. 

Christ, that hurt to type out so much more than I expected.

When you're helping each other get ready for the Homecoming dance more than twenty years earlier, it doesn't cross your mind one of you won't make it to 40. Hell, 30 seemed far enough away to be impossible. 

I was never so grateful for the distraction of DIY as I was today. An afternoon spent in the company of friends making a new & first house ready for it's occupant. I laughed, I joked, I sweat, I focused without unwelcome thoughts spearing into my brain. 

Now I'm sat here, trying to sort through a strange set of emotions and listening to a playlist mixed with cheerful and thought-provoking songs. I have a visceral need to make a kind of meaning out of the loss of her, the life of her. For me. I'm not quite sure what that means yet.

For now, here's to the friends who got us through the weird realm of being a teenager. Here's to the people who as an adult can recall scattered memories about us we've long ago discarded with true affection. And here's to those valiant people we collect as adults, with our baggage and learned lessons, who prop us up and give us what we need when we can't even name what that is. 


Caregiver's Vent

It's been more than half a year since Mom's cancer diagnosis, surgery, month-long hospital stay for complications and non-stop careg...