Tuesday, August 15, 2017

Mew!

Some mornings, the cats are way more awake than I am.

There's a shelf in my office that I've left largely empty because the cats love to use it as lounge space, and just now Maeve was up there, skittering back and forth from one end to the other, warbling like a demented wren the whole time. It seems she was trying to get my attention, because when I glanced at her, she was staring straight at me and gave this hopeful "mew?" before bouncing down to ground level and rushing over to my desk for skritches.

She's made of cute, that one. 100% pure, unadulterated cute.

Wednesday, August 9, 2017

Palliative Care

I listen to NPR at work, and today I heard Terry Gross interview a palliative care doctor about finding a humane approach to death. It got me thinking about the way my father was treated in the six months between when he went into the hospital and when he passed away in a nursing home.

We encountered so many doctors whose first (and often only) approach to any issue was to throw medication at it, or force a change of behavior regardless of the bigger picture of his health and well-being as a whole. For example, Dad had never been good at chewing his food, and had a little choking fit at least once per meal for his entire life. The moment the nurses noticed this, they called in the Speech Pathologists (who are essentially in charge of anything to do with the throat), and the SPs bustled about trying to fix the problem. They ran tests (at one point they were having Dad do "barium swallows" once a week -- because making a profoundly unwell 75-year-old man choke down liquid chalk while being live-action x-rayed is a fantastic idea), they tried some medications (I can't for the life of me remember what, because he was on so many at that point), and they restricted his diet to pureed foods.

That last part was the biggest problem for me, having to watch but not having the authority to countermand the order (my sister was Primary Medical Proxy). Dad was a foodie, he loved to eat, and if you thought hospital food was unimpressive to begin with, imagine it turned into mush. Drinkable chicken parm or lasagne, baby-food-style peas or asparagus, it was all just awful. So Dad stopped eating, and I don't blame him.

But that triggered more problems. One of the underlying issues that complicated everything but wasn't diagnosed until right before he was switched to palliative care was an auto-immune disease that made the rest of the body see Dad's liver as an infection. It's what made it possible for him to get the fungal infection of the cerebro-spinal fluid that contributed to his death. Unfortunately, it also made the effects of the heavy-duty antibiotics and anti-fungal drugs more harmful than helpful.

The liver processes blood (and medications) coming through the digestive tract, and an impairment of its function is amplified by reducing the amount of food intake. So when Dad stopped eating, his already-impaired liver had nothing with which to dilute the heavy doses of meds that were being pumped into his system. Lab results that were already a bit off got significantly worse, and the decision was made to put in a feeding tube. He was retaining a lot of liquid in his belly, which took an abdominal feeding tube off the table, so it had to be a nasal-gastric (Dobhoff) tube.

Dad pulled out six of those darned things. They were painful to put in, uncomfortable to have in, and he hated the very idea of being fed that way, but the Speech Pathologists insisted that it was the only way to get food into him. It seemed, to them, a better option than letting him eat (and choke a little) as he normally did, with the risk that he might aspirate food into his lungs and develop pneumonia. On the one hand, I get it, but on the other, they weren't seeing the big picture in the same way I was. Their priority was liability and avoiding complications, where mine was making Dad comfortable to give him the best chance of recovery.

By the time the liver issue was finally diagnosed, it was too late. The medication to treat the primary issue had exacerbated the secondary issue past the point of repair. The decision was made to switch Dad to palliative care and move him to a nursing home a mile from where we lived. At that point, I was finally able to let Dad eat real food, although it had to be in very small amounts because his stomach had shrunk so much and his body was shutting down. He took such joy in those few bites of pepperoni pizza or teriyaki chicken, in listening to the menu options I gave him (because I was going out to get whatever food he wanted rather than forcing him to have the bland, mass-produced nursing home food) and choosing which one he wanted most... in that last month I was able to rekindle his love of food, and as heartbreaking as so many parts of that experience were, I'm thankful I was able to do that small thing for him.

I can't help but wonder, though, if things might've gone differently if my sister and I had vetoed the SP's orders. I don't know if it would've saved or extended his life, but I know it would've improved the quality of his life dramatically. That's the thing that so many doctors don't take into consideration... length of life is meaningless without quality of life, and quality of life isn't necessarily achieved through medical intervention. Sometimes just leaving something alone, accepting that it's fine as it is, can make a bad situation markedly better.

I'm going back to Florida to see my grandparents in a few weeks (this time with my sister), and the issue of palliative care is present there, too. Grandpa (who's 95 years old) told me several times on my last visit, "I've lived too long. I've had enough." He's not depressed, he's not regretful, he's just reached the end of his journey. But his doctors keep throwing more medication at each little thing that comes up, from his blood pressure to his macular degeneration, and it seems so absurd to be trying to fix things and keep his life going when all he wants is a quick, peaceful death. He has an advance directive (DNR), but Grandma worries that if something happens (like another fall/stroke) and she has to call the paramedics, the paperwork will get lost in the shuffle and he'll be intubated or resuscitated before she can say anything.

This focus in medical practice of prolonging life rather than enriching it needs to change. Death is a natural part of the life cycle, and doctors need to stop thinking that their sole goal is to cheat death. It's bad for us as individuals, it's bad for us as a society, and it's bad for the planet.

Saturday, August 5, 2017

Squeak!

You know you've been away from your shop for a while when you turn on your vacuum to discover that a mother mouse has made a nest in the outlet port. She scampered off with only one of her four very young babies, but I collected the other three and left them tucked in some fluff in a place where she could find them, and when I checked back later they were gone. I hope she relocates her nest somewhere less dangerous... and not inside the walls of the house, like the rest of the mice around here. The cats already stare at the walls trying to figure out where the noises are coming from.

Thursday, August 3, 2017

Cats Not Kids

Sometimes I feel like I'm going a little bit insane when I find myself yelling, "WHY CAN'T YOU WALK UP THE STAIRS LIKE A NORMAL CAT?!?" as Kira climbs the coatrack next to the staircase and slithers through the railing... again.

One of the many reasons why I don't have children: if my cats are this precocious, my kids would be worse, and I'd go completely 'round the bend in short order. Cats, if they're getting too rowdy or destructive, can be confined to a little plastic box for a time. Do that to a kid, and the authorities start questioning your suitability as a parent.

Better to stick with cats.

Wednesday, August 2, 2017

Oh, Sift!

I'm glad I made it to the end of last night's baking before my sifter broke. It had had a good life -- it was probably about as old as I am -- and had been getting a bit rusty in the joints for a while, so it wasn't really a surprise when its springy bits sproinged their last. But now I have to find a new one, which I doubt will last as long, and I'm short on money. I think it's time to hit the thrift shops.

Sunday, July 30, 2017

Depressive Anger

Here's the thing they don't tell you about depression: it's not just sadness. It's a little different for each person who experiences it, but it can include apathy, frustration, exhaustion (both physical and mental/emotional), hopelessness, and even anger.

In my case, anger is the most intense part of it. I'm angry at this dysfunctional body, I'm angry at a culture that writes off my illness as something easily treated, I'm angry at friends and family who have pulled back, despite that being a perfectly normal response to someone who's been struggling for so long without improvement, I'm angry at a "health care" system that has nothing to do with health or caring, and I'm angry at a medical establishment that keeps trying to throw pills at every problem instead of funding research to better understand the root causes.

I'm angry at the fact that it can take months or years to get an appointment with a qualified mental health practitioner, only to discover that they aren't a good fit. I'm angry that my only back-up plan is to go to the Emergency Room, where I'll sit for hours waiting to be seen by someone who wants to keep the statistics looking profitable, incur bills I can't pay, and get nothing more than a prescription for whatever medication the doctor deems appropriate after a cursory examination. I'm angry that suicide help-lines have two options: go to the ER or take down some phone numbers for practitioners who have months-long wait lists.

And I'm bloody furious at politicians who think it's okay to cut subsidies to health insurance plans that keep people like me alive. DC needs a reality check, pronto.

Friday, July 28, 2017

Unafraid of Darkness

A few months ago, I discovered that my Jeep had an electrical problem. I discovered this by turning the key one morning and finding a dead battery because the dome lights had stayed on all night and drained it. My ex-husband helped me find the appropriate fuse for the dome lights, remove the bulbs, and replace the fuse, which didn't solve the electrical problem, but made it so it wouldn't run down the battery anymore. It was a suitable temporary fix.

Later, when the Jeep had to pass inspection, my mechanic made another temporary fix to a problem: he bypassed a wiring fault in the rear wiper switch so the wiper would function (necessary for inspection), though I'd have to time it just right when turning off the switch because the wiper wouldn't automatically reset to the home position. I know that eventually I'll want to pull off trim panels and hunt down that bad wire so it can be properly fixed, but that's low on the priority list.

As the days begin to get shorter, I've been missing my dome lights. Getting home from an event at 9:30pm meant getting out a flashlight so I could see what I needed to bring in, and that made carrying things tricky. So I tapped my ex-husband again, and yesterday after work he came down and tinkered.

I now have one working dome light, which is all I need, though it makes my OCD a smidge twitchy that the dome light in the trunk doesn't work. It makes me even twitchier that the part I need to make it work doesn't seem to be available from any parts places... just one guy in the midwest selling used ones on Ebay.

On the other hand, my ex, whom I invited down to solve one problem, actually solved two. I'd been having issues with the trunk latch sticking from time to time, so while we had the hatch trim panel off, he poked around, figured out what the issue was, and solved it with a bit of wire. He's awfully handy, that fella.

Bring on the darkness, axial tilt. I've got a dome light now. I can handle it.