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

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. 

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.