Life without chapters: medical update · 2:19am Dec 2nd, 2019
Time doesn't operate with page breaks.
There were times during the month when I wanted to tell everyone what was going on. And I couldn't, because there was no stopping point. A single moment where I could simply pause and summarize, saying 'this is the nightmare thus far' and feel I could leave it at that for a while... no. Things just kept happening, because that's what life is: a series of events which continues until it stops. The divisions we impose on it are artificial.
In the past, I've said that I try not to tell you about the bad stuff. It's a dark joke: yes, everything I'm openly saying is horrible, but just imagine what I've been holding back! And... well, let's face it: for my newer followers, this is just inducing confusion and a possible touch of Archive Panic. (Very quick summary for y'all: my mother has dementia (and other medical issues): the crash officially began 9/12/2018 and only goes downhill. I serve as live-in sole caregiver.) For the long-timers... I just get tired of feeling like I'm bringing everyone down.
Those who follow my Twitter get a little more on what's going on, because I'll post from hospitals. But I hold back from the group, because I'm sick of... being sick. For starters. But like the 'verse Twilight, I need to tell someone what's in my head every so often. It may not be how to avoid disaster, but it at least helps to quantify it.
But life doesn't take place in chapters. All I can do is draw a dividing line: everything from her most recent physical rehabilitation center release on November 4th through today. And that's artificial. Things are still happening, and the only true ending is the final one.
So... No-Sanity November in review.
The first thing we did after her release was wait for a doctor's appointment. And when examined from a certain point of view, that was also the next dozen things we did. Plus. Because I wound up taking her to roughly fourteen appointments in fifteen weekdays and for the one day there wasn't someone to see? We were in an emergency room.
Oh, and there was ER time one night after an appointment. Just for the sake of completion, and it was for one of the stupidest things imaginable.
...yeah. You kind of knew this wasn't going to be a happy update.
I need to clarify this at the outset: not all of the appointments could be regarded as major. Some of them were mandatory follow-ups: you've been released from rehab, so go see your primary physician within seven days. Others were a natural consequence of her having been in rehab for so many weeks, because I couldn't take her out more than a few times per week without disrupting her recovery schedule: this meant rescheduling, and things just... piled up. And one was simply for setting up still more appointments in the future, because she didn't get all of her strength back. She's still using the walker to compensate for the spinal disc herniation, I'd like to get her onto a cane, and that means outpatient rehab. I got a scrip for twelve weeks of treatment, got her into the center, set up the evaluation workout and -- well, there's 'and' to come. Right now, let's just say that's been postponed.
What was all of this for? I'll start with the one which put us in the ER at night: dental. I've been working on getting her partial dentures and the day after I took her out of the rehab center, I took her to the dental school to pick them up.
It took months to get them. Appointments made and cancelled. Her student's class schedule kept twisting. Molding time, double-checking fit. But they came in, and she was so happy. Her student spent a hidden hour with her while I was in the waiting room, teaching her how to insert and remove them. Impressing upon her the fragility of the pieces, how careful we had to be with that. They're pressure-fitted, y'see. No denture glue. Click and done, but it means they have to be removed with precision.
He spent an hour with her on that. Not me: I was in the waiting room. And by removal time on that same night, she'd forgotten how to do it.
I... spent a lot of time trying to get her to remember. I was afraid to attempt removal from the outside: one wrong move at a bad angle and two cracked plates. I begged, I pleaded, I officially set up the pattern for the month, and I finally surrendered for the world's stupidest ER visit: please take this out, because neither of us knows how. The nurses had them extracted within ten minutes, then submitted an extremely dumb invoice to Medicaid and called it a night.
Months to get them. She hasn't worn the dentures since.
She doesn't remember how.
I should go into the 'good' news: her Medicaid renewal went through. I wasn't quite expecting that and in any case, I was expecting to take a lot longer. Remember, it was months of waiting for the original application to be processed, and this time? They wanted all paperwork (somewhat less this time) by 11/23. I mailed the package on the 12th and had the renewal on the 21st. So for those things which can be covered, she's still safe. (This isn't everything: I'm awaiting a bill on two spinal epidural injections, which is how the herniation swelling was brought down enough to allow exercise.) It was a fairly significant exhale, especially since...
...this is just buying time, isn't it? The road only goes downhill. Eventually, she's going to wind up living in a care facility, because it'll reach the point where I can't do it any more. Where there isn't enough sanity left to appeal to, when nothing is left that listens at all, and she was never good at listening to me before this started. Dementia magnifies. I'm disregarded so much of the time and when I bring up the near-guarantee of a potential move -- she fights me. She declares her opposition, she gets so angry that there's a moment when she almost comes back to herself and I try not to... hold onto that.
(I spoke to her nurse-practitioner about that. Asked if there's any studies on anger and adrenaline temporarily reversing dementia. One chemical cocktail a day and you're practically yourself again, only in a perpetual Bruce Banner edition. But the NP felt the emotion was just fighting off depression. Oh, and that my mother has some depression. Because I'm the caregiver and therefore, no one tells me anything.)
December 23rd is when we speak to her primary again, and the topic will be medical power of attorney. At some point, she will need memory care, I'm expecting her to fight me, fight her doctor, and if this winds up going to court, lawyers and legal fees and...
...we were talking about good news.
Okay. The other piece of good news is that one of those appointments was with her insurance representative. He approved her for twenty-five weekly hours of home health aide visits. This creates time where someone is talking to her, watching her, taking care of her, and allows me to leave the apartment without more than the usual amount of panic. It potentially extends the time I can keep her out of a facility.
Of course, this then meant lining up an actual agency. The first one outright rejected her. The second called me and started into a full 'I love this so much that I am never going to buy it' speech: I hung up on him. The third accepted her. The third also has yet to cross the threshold of the apartment. They're waiting to see her, just like the outpatient rehab facility.
I don't know how long they'll be waiting for.
She was wetting her bed.
Urinary incontinence. It's been a minor problem for a while, to the point where even before the dementia, she used pads -- but nothing more. After the unconsciousness from last winter's aspiration pneumonia, I picked up a top-of-the-sheets absorber fabric patch, which would work just fine except that her dementia insists that it would be so much better on the other side of her bed.
It wasn't happening every night. Sometimes she would get up during the small hours and go for the bathroom. There were times when she remembered to use the walker for that, and that was part of why I've been having so much trouble sleeping because the sound of a cheap walker (Medicaid mandatory model) being scraped over floorboards wakes people up. Others when she would keep sleeping, and her sleep...
Sometimes she would be up at six in the morning, go to bed around nine at night. Several days saw her out cold by three p.m, remaining asleep for hours. I couldn't wake her up long enough to make her eat dinner: on those nights, I could barely get her to focus enough for her night medication. Putting the pills in her mouth. Trying to make her remember that she couldn't just go for the juice: she had to swallow pills with it. Over and over. It was a good day if I got two meals into her, kept her hydrated, and she didn't create a full load of laundry.
I scrubbed the sheets and mattress. Twice. The car's trunk started carrying an emergency pair of underwear, plus pants. And urinary pads, always pads, she gets free ones from a friend but she doesn't like that type and so $15.28 for a large package which lasts...
She was going through seven pads a day. Or more.
I suspected a urinary tract infection. I had reason for that, I think. (Remember, the laser vagina procedure was just supposed to cut down the frequency of incidents: this would have been her first one in months.) We had days where she would be on the toilet six times in a single hour, and I was just trying to keep her hydrated as best I could while we waited for her urologist appointment, because we had a cluster@%^& of appointments and so he was in there too. He prescriped one new medication and called it a day.
Then she soaked her sheets again, on the one weekday where we didn't have an appointment.
Hello, emergency room.
If you're in the ER enough, you learn the routine. Blood test. Urine test. Probably no other test and if those first two come back negative, goodbye. We got the 'goodbye', because her urine came back clean. They sent her out the door and back to the toilet. But they did call her urologist, who happened to mention something which hadn't come up before. That new medicine? Takes up to six weeks before it builds up in the body enough to become effective.
(I wouldn't have reasonably expected him to tell me that earlier. I'm the caregiver. No one tells me anything.)
And the urination problems kept getting worse.
A few days after that, we saw her neurologist. Mynasthenia gravis check, mostly. He's the only person she'll take orientation questions from: with everyone else, she accuses them of being stupid, wasting her time -- any available deflection. From him? Lamb being directed by her shepherd. And I was in the room for this. The first time on that: she normally sees him alone, and so he barely knows me.
He asked for her birthday. She rattled it off immediately.
He then asked for the current date. She gave him her birthday.
She -- stayed with her birthday for a while. The closest he could get with her on the year was 2001. But at least he could get answers, right? I can ask her to do something six times and she says 'Okay,' followed by not doing it. Or in the inverse, ask her to stop, and she says 'Okay' and keeps doing it...
But gee, when it comes to her primary disease, she's doing fine.
He asked me if I was the caregiver. (This was with her in the room. People have been talking as if she isn't there at all, and... it's hard to say they're wrong.) I said yes.
He asked me if I worked. (It's -- hard not to be insulted by that, but I managed.) I told him I could work at home, but that working hours were becoming progressively harder to come by. That's why I didn't really post anything in the first half of the month: because it was appointments and laundry and horrible sleeping hours and walkers scraping down the hallway, except that she would become confused, go into the kitchen, and start supporting herself on the kitchen stool. Over and over, no matter how many times I begged her to stop, I nearly tossed the stool in the garbage and...
...anyway, I work from home. But it's hard to work, because caregiving.
(I didn't tell him about the Patreon or Ko-Fi. I have never told any of her doctors, nor is there a single family member who knows what's going on there. I've wondered if admitting things would make me feel like Dexter Morgan in the psychiatrist's office. "I'm a fanfic writer -- oh God, it feels so good to say that out loud!")
(Of course, Dexter then killed the shrink.)
(Who had it coming.)
(It was the first season. The show was still good.)
He just looked at me.
"This situation," he declared, "is non-sustainable." Not referring to the idea of trying to live off writing fanfic, because he didn't know about that. Just... trying to take care of her. Trying to keep going at all.
And I said "Y'think?"
I asked for his help, just before we left. Mentioned that I had the power of attorney visit on December 23rd, and that I might need an extra voice in my corner. He agreed.
Not that we've gotten that far. Not that we may get that far at all...
The neurologist appointment? Thursday before Thankgiving.
On the 23rd, she had a friend visit. Stayed most of the day, which mostly meant watching her go into and out of the bathroom. I still thought it was a UTI, but the test had come back negative and -- I couldn't take her to the ER again, because nothing had really changed. No new symptoms, no chance of having her treated. All I could do was watch, and try to take the kitchen stool away.
Visits normally perk her up mentally: she often reaches a point where she can cook (with supervision), keep a conversation going. She can be the same way on the phone, at least in short bursts. But this one... not to the same degree, and so much time was spent in the bathroom until she ran bone-dry and I had to get her hydrated again, triggering a future incontinence burst. I was taking bags of used pads out to the trash every day. I was exhausted, and it hadn't even been three weeks since her release. But a home health aide would be contacting me on Monday, her friend was visiting, and I asked for as much relief as possible. A chance to write.
In reality, it mostly meant having two of them interrupt me. But I got a chapter of Anchor Foal up (on the 24th, a little after midnight). Maybe that was what the home aide could really do for me: you go write, because someone else has Got This. And I was thankful for the chance to breathe a little, I'd barely been able to leave the house by myself because the charging station on her LifeStation necklace broke and I can barely get her to wear the thing anyway, but it was out of power -- the replacement came in Tuesday -- and with no one monitoring her...
The friend watched her, and I was grateful.
I'd gotten an offer of restaurant credit in the mail. Promotional drive. It had to be used. So I offered to take them both to lunch on the 24th. Just thanks for having been there. For the brief chance to think.
And there, for lack of a more sarcastic description, was my mistake.
Caregivers should never make personal plans more than three hours in advance.
I was thinking about putting up a joke blog, just before Black Friday. Who Wants To See My Amazon Wish List? And the link would lead to an Amazon Dog, because when the page can't be reached or just doesn't exist, Amazon shows you a picture of an employee's dog. World's cutest 404s.
I don't have a Wish List: I scrimp, save, take surveys -- Amazon gave me a $5 one themselves last month -- and pick up a few things here and there, although this Black Friday was a dark joke. But the things I need most... I can't pay for them. Neither can anyone else.
One day of sanity, please.
How much for a single coherent response?
Are the moments of true hope sold out again?
Or maybe just -- one of the dogs. I miss having a dog. Just to have someone happy to see me when I come home.
But I can't get another one. I'm already looking after a helpless creature which can't take care of itself...
By the morning of the 24th, she'd gone through more pads. She was pushing the stool. She was barely responding to any question. Most attempts to speak triggered, at best, 'Okay' and no chance of course. The sheets were wet again.
And I was terrified.
I was also grateful.
Because the bathroom stunk.
She hadn't been flushing. The urine in the toilet was cloudy, and everything smelled like ammonia. Those are symptoms of a urinary tract infection. I had something to work with. An explanation for the dementia spike and everything else which had been going on. I could get her treated --
-- but I was having trouble getting her out the door. She hadn't even gotten dressed, she really wasn't thinking about the ER or much of anything else, and the awareness which remained was mostly thinking about lunch. And when you're about to go in the hospital, eating is a good thing: getting food in the ER is an exercise in desperation, especially if the tests mandate not consuming anything for a while. So maybe I could get a fast lunch with her friend, then hit the hospital. It was taking a chance, but she needed food and in any case, no matter what happened, she had to get dressed. So I asked (begged, pleaded) her to put pants on.
She interpreted this as 'panties.'
She put on five pairs. One on top of the other.
(I told every person I spoke to in the hospital about this. I had to sell them on Not Normal.)
-- call her friend, cancel lunch, thank her for the offer to go with us to the hospital but we may be there for hours, and then I did everything I could to get her down the stairs, into the car, and -- let's see, time to spin the Wheel Of Medical Facilities -- I'll try the one which diagnosed the spinal discs and just hope she doesn't wind up in the Transitional Care Unit again.
It took some time to get a urine sample from her, because of course she'd emptied herself out again. But it was easy to tell when it emerged. Somewhat harder to stop gagging.
She then complained of being hot, took off her sweater.
Turns out she'd also put on three bras.
Consistency.
They admitted her.
This is the part where you decide I'm the worst person in the world.
(Seriously. Follower/sponsor nosedive ahead. And I won't blame you.)
I didn't get home until close to midnight. I slept with my dumbphone next to the pillow, managed about five heavily-interrupted hours, and then it was back to the hospital. She was being kept on a lower level, but not in the TCU: I was hoping that would help. I needed to see how she was doing, because they'd started her on antibiotics before the urine tests ever came back. There might be an improvement.
How was she? She was sitting in a reclining chair in the ward hallway, next to the door of what had been her room, covered in blankets. Looking utterly exhausted, because she'd had no sleep at all.
...they gave her a bed. I was there. Why had she been displaced from her --
-- and a sound came from the room.
It wasn't quite a scream. A scream requires some degree of intent. It was... closer to a howl, I think. There were times when it approached the borders of language, but mostly by accident. You could hear just about anything in that howl, and there were a lot of chances to do so because it just kept coming. There might be a gap of one to five minutes between them, and then there would be a burst of Far Too Many. Repeat as not needed.
My mother was a little more clear. (The antibiotics were still coming, and the IV bag was also in the hallway.) She explained that her roommate had been making that noise all night. Sleep had been impossible, so she'd asked to be moved and -- the hallway was as far as they'd taken her. The door was being left open for the purposes of monitoring, so the sound just kept coming and the staff was looking to move one of them, but... they needed to find a bed.
I looked into the room. There was an elderly Asian woman in the other bed. Her eyes were closed, and then they were open, and then there would be sound. I didn't know what was wrong with her. I just understood it wasn't her fault. There was no way to blame her. She hadn't asked for this, and surely a bed would open up soon.
Hours in the hospital that day. I didn't always stay in the ward: I needed to move around a little, especially since there were no chairs for me in the hallway. But I stayed, did due diligence, and listened to the howling because there was no other choice.
The woman's family went past me at one point. Two of them, in late middle age. Walked into the room, stayed for a while. Visiting.
Too many hours of doing nothing but waiting, and... that was how this story was born. Those of you who've read it probably already spotted that, because everything in a writer's life is story fuel, even when you're working on this kind of tier. I resolved to treat the woman gently, because -- it wasn't her fault. Whooping cough would do.
(One actual moment from that day which never made the story, because I didn't think anyone would believe it in fiction. I did tweet it, though.)
Sitting in the hospital. Loudspeakers go off.
“Doctor Wacko, report to emergency medicine. Dr. Wacko...”
My confidence in the staff has decreased.
(And then they had to repeat it.)
But I had to go home. Her assigned doctor wasn't due in that day, so I hadn't spoken to anyone who could tell me what was going on. I would have to try again tomorrow, when that physician -- the same as the one she'd had for the spinal discs -- finally came in. And when was that scheduled for? No one could tell me that. Because there's other patients to be seen, and I'm just the caregiver.
...fine.
I came in at four-thirty the next day. A.M. That should give me a chance at interception, right? If I'm there the whole time, I can't miss her. But I also can't stay in the ward forever, so I asked the nurse's station to call me when she came in. And just to be safe, I would go back down to the ward every couple of hours.
My mother was in her assigned hospital room. Sleeping, because the howling woman had been moved. I let her rest.
So that's how The Waiting Doom II got written, over the course of two days. The hospital has a medical school attached to the back of the building, and their cafeteria has been closed for food service since September -- but the eating area is still open, and the wifi is running. I found a table near an outlet, plugged in, and used the tablet. A hundred minutes of writing, go back down, stay for a while, come up again, plug in. Other people used that area, which meant I couldn't always get the outlet -- but I managed to keep the power level up, and somehow, a story emerged.
Except that her doctor never called me.
Hours. Have another soda. Then one more. The phone didn't ring. I couldn't leave the hospital and got stuck on vending machine food. Up and down. Still waiting...
Around 3 p.m, I went down to the ward again.
They told me I'd just missed her.
...what? You were supposed to call me --
-- but we did! No one answered!
I took out my dumbphone. I had no missed calls for that day. No false receives. Nothing. They did not fully accept my evidence.
It's possible that the network went down at just the wrong moment. Or my dumbphone, which is a few years old, used this opportunity to tell me it needs replacement. Or they just called the wrong @#%^ number.
I spent an hour very carefully not threatening anyone until they got her on the line for me. (I never saw her face-to-face.) And she told me the tests had come back. No urinary tract infection.
...excuse me?
None.
Cloudy color. Ammonia stink. Increased dementia --
-- no bacteria in the culture. No white blood cells. Nothing. She doesn't have a UTI.
So this is where we enter a House episode and in fiction, the team would go to work on this. What presents every symptom of a UTI, but isn't one? Gonna be a heck of a show!
In real life, they called a urologist for a quick consult and, once I reached the hospital on the following day, informed me she was being discharged to her previous rehab center. Because she'd had some response to the antibiotics (for an infection which didn't officially exist), was more stable, and therefore the thing to do was free up the bed.
That's how much notice I had for the discharge. How much choice. They weren't going to figure out what was actually wrong with her. They were just going to turf her off. And the rehab center was better than going home, because she was still sick. She'd wet the hospital bed multiple times, once right in front of me. At least in rehab, there was a medical staff. People who could evaluate her immediately and send her back to the hospital, where I had to beg...
We're at the day before Thanksgiving, and those of you who saw my comment on that story know what happened next. I arrived at the hospital at about 11:00 a.m. Discharge was set for three in the afternoon, and I had to be there for it so I could go ahead to the rehab center and give them a full briefing, along with doing a medication review because we've already had one fiasco at a previous center.
At 3:30 p.m, the discharge was rescheduled for 5:30.
I went into the ward at 5:20 and asked if the discharge was still on schedule. The nurse’s station attendant told me it had been reset to 7:30. This meant going into my mother’s room so I could tell her that and while I was in the middle of doing so, the attendant signaled me to come back out so she could correct herself. She’d said 7:30. She now meant 9:00.
...yeah. By the way, actual discharge? 9:40 p.m.
So more up-and-down. Working on the story. Talking to my mother during the breaks. And at about one that afternoon, her previous roommate came up, as a nurse was bringing in medication. How the hospital had moved her, how it was easier to sleep, that I hoped the woman was okay --
"She died."
The world crashed.
The nurse kept talking. It had happened sometime during the night after I'd seen her. The staff didn't know when, because she hadn't been hooked up to monitoring devices: they hadn't seen a need. The door being open? Turns out that wasn't enough. There's a time when the sound stops, no one thinks anything of it with the possible exception of relief, they come in later and she's dead. Transferred to the morgue.
I had seen her on the last day of her life.
I had watched her family visit. Taking the last horrible memories as permanent overlay for everything which had come before.
I turned her into a character in a story.
I had to get out of the ward. I went for the school cafeteria again, because I couldn't be around anyone else, I had been present in the antechamber of her demise and this was what I did with those hours, and by the way, now go be funny.
You know why I'm the worst person in the world? Why I deserve some hate right now?
I left the scene in.
@$%* me.
I got to the rehab center ahead of my mother, provided the briefing, saw her tucked in and promised to bring a suitcase the next day. Thanksgiving. They were serving a turkey dinner for residents in the little dining hall, and my dinner plans were -- to eat something.
Sleep. Get up early, pack her clothing for an indefinite stay. (The hospital had guessed one to two weeks, presuming no relapses. I have yet to speak to anyone in the rehab center who could give me an actual date. More waiting.) I went into the building as soon as it opened for visitors, found her in fairly good shape. A couple of hours spent in talking and watching television with her, and then I needed real rest. At least she seemed to be in pretty good spirits.
Three hours later, the call came in. From her. And it was last December, because the accusations were the same. I'd abandoned her. I was sticking her in there against her will. I didn't care about her and yet I was apparently going to come and take her out. Immediately.
I tried to explain, but... it didn't matter, because you can't argue with dementia. I told her that she needed to be among doctors, she didn't listen, she just kept saying the same thing over and over, and I finally told her that I'd be there the next day and not to take her out, just to see her -- then tried to hang up.
The next call (three hours after the first) had her presenting more calm. Now she was trying to logic me into getting her out...
I managed to make some form of dinner.
Eating when your mind and body are in that much turmoil isn't a good idea. The next twenty minutes were spent glued to the toilet.
So.
I visited her on Friday. She was still very much in the Take Me Home Now mode, reverting to those arguments a few times per hour. (I think part of this is because they won't let her work out whenever she wants to: between that and the mobility issues which she is now denying -- including telling me she's never fallen in her life -- she thinks I'm keeping her prisoner.) I couldn't convince her that there was a real reason for her being there, and I finally told her that I wouldn't be in on Saturday because it was the last day of the month. I needed to write. I told her that over and over: no visit Saturday, because -- well, in part because it would emotionally wreck me to the point where I couldn't think. I thought I got through.
At 9:00 a.m. on Saturday, the rehab center called me because according to her, I was always there by now and so I had to explain it all over again. Asking them to remind her throughout the day. Oh, and they called me on their lines when her phone is right there, so maybe she's forgotten how to use it.
I still don't know how long she's going to be in there. When she's getting out, or if she'll wind up in the hospital again. It's keeping me from making much in the way of plans, at least when it comes to anything over three hours.
Her rehab stay costs should be covered by Medicaid, at least for a while. No one's spoken to me about that either.
I saw her today. She was actually somewhat happy to see me, because I hadn't been there on Saturday and gosh, Stockholm Syndrome for her jailer. Or someone who can't take care of themselves just wants the familiar to come through the door. But I'll take her dentures there tomorrow. I'm going to ask the nurses to teach her about removing them. Maybe it'll stay with her this time.
And I'm sick. Of course I'm sick. I'm stressed and I was in a hospital for double-digit hours every day: can you think of a better recipe for falling ill? I woke up at three in the morning with what I'm hoping is just a cold. No muscle aches or shivers yet, so I can probably just Nyquil through it. Plus the Jets lost to the Bengals and laughter is the best medicine, right?
I don't have an Amazon wish list. There's no point. I don't think it's possible to set one up under a false name and have things sent to a drop address. And even if I wanted to do it...
How much to have her cured?
...there's nothing good for sale.
Dark humor aside, I do know that you're far from the worst person in the world. If nothing else, you turned someone who may have only had a small handful of mourners into potentially hundreds, if not thousands. For one moment the this woman will never know, hundreds of people knew of an existence only to remember at least that little bit of her as time passes.
I know it's hard think think of yourself in such a way, but you truly are one of the strongest people I know of. Perhaps it's just the Fluttershy in you that can't see the good. You're the blank page to yourself; having said you're horrible enough times that you might actually believe it on some level.
Well, I don't.
I hope you feel better soon, and I hope you get something of a beak. Hopefully there will be some good memories that aren't soured by this experience, and I hope that one day you can look back and say you did the best that you could. Cause sometimes, that's the hardest thing of all.
*hugs the Estee tightly*
For whatever it's worth...I don't think you're the worst person for using that as a part of your story. We write what we know.
I've seen what dimentia does to people. It runs in parts of my family, so much it practically gallops. There's little anyone can say or do to offer comfort or hope for the future, let alone a stranger from the internet.
Good luck. Keep your head up. It'll be ok in the end. If it's not ok, it's not the end.
I am sad to say that all I can do is keep your family in my prayers. While reading this, I kept remembering my family dealing with my grandfathers dementia as well as when I worked in the kitchen of a retirement home/care facility. After all this time I still have trouble dealing with the memory's, but know that you are not alone. Others have bin ware you are. I don't know if saying that is any help but it is all I can do.
As for the story thing. We all create different things based on our experiences. I wouldn't change a thing, and you shouldn't feel guilty about it (I know, "small potatoes").
You're a bad person? I'm worse. I've been told that I have a VERY sick sense of humor. It's a joke in my family
"If God had sent Pharaoh the first plague, then sent me to cheer up Pharaoh about the first plague, He could have gotten the Jews out of Egypt a LOT faster & saved Himself 8 perfectly good plagues. But, God was merciful. He did not send me, He just killed all the first born sons."
I free associate stuff. When I read your "Why I didn't write on Saturday" it brought this to mind.
Guaranteed insensitive & offensive.
Thought the better of it & deleted it, thus sparing you the poisonous details. But, it does make me feel better about my life, just by contrast
Regarding having that woman in the story, Estee, I can't speak for her, obviously, but I can at least imagine her finding it, if she'd known, as at least something positive coming out of that hospital stay. So while I can't say that leaving the scene in was good, I can at least say that I don't think it was definitely not good.
As for the whole thing... I do not know how you do it, Estee. You are an amazing and wonderful person, and I'm so sorry you're having such ample and unpleasant opportunities to display it. I really, really hope that you can get this sorted out in a way that gives you some peace and health.
My grandmother was like this on her home-run slide. (She was told she'd live five years. She lived twelve. That last year she started to decline, and every month was faster). Except... she was just stubborn, and didn't have a diagnosis of dementia to have other people make decisions for her in spite of her wishes, to stay in the care facility or listen to her doctors.
You are not the worst. You are doing your best and pushing yourself to the limit. I hope all goes well this month and the care facility will not release her early.
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I was just thinking somewhat the same thoughts. Good on you for writing them and for being encouraging.
Estee, you truly are a good and caring person. You are doing your best in a situation that many would turn or run away from. You are there everyday, doing all you can. Take care of yourself as best you can and know that you are in our thoughts. *Hugs*
I always like these personal updates, even as they get harder and harder to read. I was a bit worried when they didn’t come for a while. You aren’t a bad person, but you are doing a bad thing here and it’s no literary sin: your well meaning reluctance to keep her out of the custody of professional strangers is doing you and her real harm. Put her in the damn home already!
It seems so obvious to me and the other commenters here that she should have been there for a year already. You don’t need to justify yourself to this internet peanut gallery of course, but maybe you should anyway: present your case. I’m no expert on American law, but the idea of her suing you seems ludicrous even in sue-happy America. That sort of lucidity and agency is a blessing you can rely on being denied. Write down what good you have really accomplished in this past month (or year) and if it still convinces you on the editing pass then post it.
Dang, that's freaking awful. *hugs* so sorry you had to deal with all that. And you're actually a wonderful human being to deal with all that.
Your a great person Estee I would have broken down long ago if I had to go through what you do. Keep your head held high we love you!
Thanks for the update, and for always doing your best to turn even the worst of life into something good.
You're not a bad person. On the contrary, you are an exceptionally good person in a bad situation. Hang in there.
Her family will remember her and your story didn't hurt her. It's fine.
Zog and buggery, what is wrong with the medical establishment in your area? I'm surprised they aren't drowning in malpractice suits.
Atch, you're not a bad person, you're an incredibly good person who has someone scream at you daily that you're an incredibly bad person. That would scar anyone, and it's further evidence to your credit that you are still so bent on supporting her.
I must admit, I'm more than a little concerned for you, Estee.
That doctor was, of course, correct: this is not sustainable in any sense. You agreed. Thank you for doing so. The fact that, despite this unsustainability, you've managed for over a year is nothing short of Divine strength working a miracle in you.
But (and please forgive me, I don't mean to add to your stress) what about after it's done?
When this situation is finally resolved, however that looks like, you and your body will decompress involuntarily. My fear is that your body has been living on stress level 10 for so long that when you finally destress, for lack of a gentler term, you will develop psychological "bends," in much the same way as deep sea divers. Please please please allow yourself to decompress gently.
Yes, we knew that there was no conceivable way for a happy update to exist. Because things meaningfully improving is a medical impossibility, so even if they did it would just mean way more doctors being way more intrusive in trying to figure out what the **** happened.
I mean... pony naming conventions? It probably makes more sense in Equestria than in our world.
No, and after reading the next sentence in the blog I still don't. Seriously, I would have abandoned your mother years ago. (Yes, I'm aware that the actual madness only started a single year ago. That's actually part of the point.)
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It's a low-income neighborhood, so it would be the patients drowning in the legal system and they take that as an excuse to skimp on quality.
Vibes, Estee.
You're a good person, struggling with an intolerable situation. Don't beat yourself up over your writing, your life and your mother's dementia are already doing that. And you don't deserve it either.
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Couldn't agree with this more. Don't fret over it too much man, ya got enough you don't deserve to deal with already.
Hope your visit goes well and you're able to get some form of rest.
I don't have much specific to say that others haven't said better. Suffice to say, I don't think you're a terrible person by any stretch. You're doing the best you can, and it's better than so many others would be able to achieve after so long with so much working against them. Best of luck in the time to come, and here's hoping that medical POA visit goes well.
Estee — we’d rather you keep posting than the alternative. The alternative has been far worse for people in better situations. As it is, we’re your support network, and things that aren’t connected to their supports tend to tumble.
I presume you’ll have access to a lawyer for the Power of Attorney visit — see if you can submit your posts here on your “writing blog” as testimony or evidence or something. It’ll all but guarantee you get that power.
(Having not read the Pinkiecare thing yet, I can’t comment.)
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I often wonder about the weird little eulogies we leave behind. How many stories, good or bad or weird, we have as memorials from people we've met for maybe ten minutes and never seen again.
I don't think Pinkie would have left peaceably if the ending was the same and she found out, though.
You're not a bad person.
Not even close. Not for writing. Certainly not for writing this, a bit of hell filtered down to merely heck via pony.
Estee, you didn't know that woman was going to die. You couldn't have known. You aren't a bad person; just a person, trying to do their best, and trying to get by. You can't predict the future.
What I said about you doing your best is true; reading an entire page about it is pretty convincing. It's okay if you may have a nosedive downhill. You're trying your best.
I'll be praying for you. We'll all support you to the end. I hope everything gets better somehow.
The simple fact this made you feel horrible disqualifies you from being a bad person.
A wise person once said that people aren't truly dead while their words are still being read.
Perhaps the same is true about people being written into stories.
'I may be a bad person' says Estee, in the middle of chronicling Year Two of nigh superhuman efforts to care for a loved one with a terrifying long term mental health diagnosis solo.
You are not a terrible person by any stretch, and humor is one of the best possible coping mechanisms when confronted with death, or under enormous, unsustainable pressure.
Now there's someone who has probably heard all the Animaniacs jokes. Including the ones involving Hello Nurse.
Seriously, it bears repeating: you can't possibly be the worst person in the world because what the **** would that make me? And what would it make the people I've gotten banned from this site and others for being even worse than me?
For whatever it's worth, I think I saw that scene with Pinkie helping the elderly pegasus mare find a new room as holding the spirit of wanting to help those people you couldn't in real life, in more than one way. I don't think you're a bad person for incorporating an experience from your life into your story in a way that made sense for it, nor is it insulting. You couldn't have known what was going to happen to that person, and in a way, you've immortalized them in some small unimportant way. It's a mark of your character that you did feel bad though, because good people feel bad about being disrespectful despite any intentions otherwise. You got people who otherwise never would have thought of that patient and got them to mourn them, if just when reading about their fate after, if only for a moment. It's still something.