Feeding tubes and weird ideas | Ballastexistenz
My Blogging Against Disablism Day post over on my main blog. Deals with the struggle I had to get a feeding tube, over the objections of doctors who would rather I have died. And also the strange prejudices people have about how if you have a feeding tube, your life must be over. When I feel like after getting a tube I finally have the chance to be alive again.
I think I just discovered yet another reason for the mortality rates in nursing homes.
So I get most of my services from an agency that treats me well. And then there’s the VNA. They provide bathing and intimate care. The VNA does its best to resemble a nursing home without the walls and stuff. I know people who get all their services from there and it’s truly dismal.
So an LNA comes over today to do all the physical assistance they normally do. Mostly involving washing me and applying medications to my skin. It involves a lot of grabbing me and moving me around.
Most days, I interact with them. I say things. (Which, for me, involves typing on an iPad that’s seriously clumsy in that posture in bed.) I move my body more than is required of me. I visibly react to things they’re doing and saying. I pull away or squeal when they dig their fingernails into my vulva. I tell them when they haven’t dried me enough, or when they miss a spot. I pull away when they put things where they don’t belong. It doesn’t look like a lot at the time, but it’s interaction.
Today I feel sick. My chronic nausea and lack of appetite is flaring up for reasons unknown. I’m not throwing up, but I’m sluggish as all hell. And I feel gross all over. I’m not thinking clearly. Things are not good, and they look not good to anyone who is paying attention.
When the LNA went through her routine with me, I didn’t interact with her at all. My eyes stayed half closed the entire time. I let her lift and manipulate my limbs without interfering. I didn’t squeal or pull away when she put her fingernails in places fingernails where fingernails just shouldn’t go. I can still feel the pain from that. I didn’t alert her to wet areas she didn’t dry. I did the bare minimum of movement required of me.
Any staff person who normally works with me, from outside the VNA, would have noticed something very wrong immediately and asked me if I was okay, to make sure it wasn’t something serious. In my current physical state, the effort of replying would have bothered me, but I’d have understood why they had to find out. I’ve got several conditions bad enough to put me in the hospital. They have to make sure it’s not that, because I sure as hell won’t, not when all I feel like doing is going as inert as possible.
(My body is intent on proving my point. It just spent several minutes getting me to do absolutely nothing.)
But when the LNA was here it became clear she was relieved. Relieved because I am just one more body she has to contend with. And my feeling sick meant that she could just interact with me as another body she could clean.
(Insert another period of doing and thinking absolutely nothing for a few minutes instead of writing.)
This made it easier because I did not resist her moving me around. I did not give her any instructions. I did not tell her she did anything wrong. This made her physical interactions with me easier and more efficient.
(Insert another inert period.)
Nursing homes are organized more for the convenience of the employees than for the people who have to live there. So is the VNA.
Certain ways that people behave when sick with some kinds of conditions (including ones that are life threatening) are so much more convenient for staff, than actually having to interact with us as people. This way we behave is especially true of people with communication problems or severe cognitive or physical impairments, where lethargy may be the only outward sign of something fatal. And people among that group who are more likely to get ignored than others include both women and people of color.
I can totally see the less ethical staff in a nursing home welcoming the ease of taking care of people in all the routine ways, that comes with those kinds of illness. When someone’s too lethargic to interact much, they’re usually too lethargic to interfere with routine care in all the ways that healthier people need to do. And some staff would see that as a relief, not a danger signal.
And when danger signals get ignored, people die. I have needed hospitalization at times when I looked not a lot different from how I do today. I’ve become really really Inert as the only outward sign of things like having an organ fail on me. The first step in learning whether I’m in danger, is to ask me how I’m feeling. I may not always give the best answers — but it’s the first step of many, not the last.
(Insert semi-inert period.)
And yes. As far as I know, I’m okay. I need to keep a really close eye on this though, because things like this can change.
(Insert another inert period.)
The number of ways that places like that can put us in danger. It scares me and it pisses me off. Like our lives are less important than the convenience some people experience as they maneuver(*) our bodies around.
I had better go because my body wants to be inert. Or at least more inert than writing long(*) involved posts(*). So, yeah, stopping now. But this is a seriously fucked up situation that is life and death for people who are(*) in situations where most or all of their caregivers have this mentality.
(*) Yet another inert period.
This is not cool.
I’m fairly unfazed by it emotionally. But it was still not cool at all.
I get that when you’re simultaneously frustrated, stressed, pissed off, and in a hurry, you’re going to handle objects roughly, slam them around, press really hard when you scrub things, etc. Just about everyone does it. It’s unpleasant to be around. But that’s all.
But today those “objects” were my arms, legs, boobs, and private parts. And that is just… way far out of line. The main reason I didn’t feel bad about it on an obvious level, was that she was treating me so much like an object that she didn’t know I was there to direct anger at. And if that’s doesn’t take fucked up to a whole new level, I don’t know what does.
Caregivers get away with this. All the time. Because it is hard to prove that someone used the wrong kind of touch while they gave you a bed bath. And I needed the bath. And I was too sleep deprived to feel the outrage I should have felt.
People who work in this field sometimes treat us as if we are countertops to be scrubbed. They forget that our bodies contain — are — real people. Who actually feel it when people treat us like this culture treats objects. And on busy days, some of them act like we are a pile of laundry, or a sink full of dishes. Something many people just try to get through as fast as possible, one after the other, with as little regard for our individuality or personhood or feelings, as they can give.
I can barely keep my eyes open, and when they shut I fall asleep and type gibberish. I don’t feel furious or violated or anything like that. I must feel it intellectually or I wouldn’t have posted this. Oh well. Need to sleep. So this goes up as is.
Something awful I just remembered.
I never made a lost cat poster when I was a kid. Never. Despite cats going missing right and left, some of them coming back, some of them not. My parents’ attitude to cats going missing was basically to give them up for dead and be happy if they showed up again.
(Unless, like my dad’s favorite of our cats, they came back with their entire back end mangled and crawling with maggots from being dragged under a car. That’s one of the few circumstances I don’t have even a minor qualm about cat euthanasia, and the cat didn’t seem to have any qualms about it either. I mean I miss her, but that would have been an utterly terrible death and there was no possible way to save her or treat her pain and let her die naturally.)
To give one of the worst examples. We moved from Campbell to just over the San Jose border in a place where we still had a Campbell mailing address but voted in San Jose. (On Google Maps it turns up saying San Jose with a Campbell zip code. Weird border places are weird.) It was easy biking distance so it was easy catting distance too.
All of our cats tried several times to go back to our old house. I don’t blame them, the new house was terrible and they didn’t quite grasp this “moving” thing.
My parents made no effort to look for them.
They made no effort to contact the new tenants in our old house and give them a heads up about all the cats appearing in their yard.
They made no effort to plaster the neighborhood with lost cat posters. They made no effort to put up even one lost cat poster.
They made no effort to tell anyone anywhere in any form that any of our cats were missing.
Some of the cats came back. Some didn’t. One of the ones who never came back was the mother of two of our other cats (my parents only barely believed in neutering, sometimes). She had been with us since the redwoods. I have pictures of me sitting with her hunched down by me when I was a baby, me toddling along behind her when I could barely walk. She’s probably one of the ones who slept in my crib and half convinced me I was a cat. I was devastated. My parents were fatalistic and indifferent.
For people who claim to like cats, their level of neglect reached astounding, fatal heights on many occasions and I still get angry. I know they know how to care for animals because they took dogs to the vet for the slightest thing. They only took their cats in for shots and things like that. One cat slowly wasted away and died without any vet care. Another lived with a severe chronic cough for years. I can’t even count the number who died without a vet visit first, or who were taken to the vet only to be euthanized. (This kind of thing is why I think euthanasia is vastly overused.) And then there’s the mildly disabled kitten they took away from my brother’s girlfriend and dumped somewhere. They didn’t know why she cried until she vomited.
One time our cat Jenny disappeared. After awhile my parents gave him up for dead. Then they saw him through the window of our neighbor’s house and took him back, enraged at the neighbor. I think he would have fared better with the neighbor. He was euthanized for a mild illness.
It’s no wonder my mom thinks Fey will drop dead any minute. (She keeps telling me “Fey is trying to tell you she doesn’t have much time left, she wants you to give her permission to leave you so she won’t linger after her time.” And other cheery stuff like that. Thing is, Fey hasn’t told me that, ever, and she knows perfectly well she doesn’t need to hold onto life on my account if she wants to go.) Very few of our cats passed the seven year mark before they died, and only two lived past ten. And we made no effort, that I remember, to save even one. That’s beyond “letting go”, it’s animal abuse.
I know I’ve written about some of this before but I forgot the thing of not even making a cursory effort to locate lost cats. It astounds me that I ever grew to respect cats in that environment.
Why it is impossible for me to ever trust someone who chooses to remain friends with an abuser.
[tw: abuse, apologism]
I’ve had the same problem in people remaining friends with a small number of people who were stalking me and had abused me in the past. Not within the context of a relationship (although one of them pretends to have had a long term sexual relationship with me, when I don’t even count whatever we had as a true relationship, it was so fleeting and coerced). But still, a long history of really fucked up abuse, then stalking and harassment after I realized it was abuse and cut off contact. And another stalker who popped up later.
With one of them, what I found was his male friends didn’t even take his abuse, rape, and stalking of women seriously. Even after people got restraining orders. One of them referred to him as “a compulsive liar who’s obsessive about women” in a kind of shrugging “what are you going to do?” sort of way. What I saw was that he would hurt people, often in a criminal way, convince people he’d changed, then do it all over again. He could be very charming and persuasive, and had what a friend of mine described as an “innocent and slightly wistful act”. One reason he hated me was I saw through it.
And I found that he was actually manipulating “mutual friends” into contacting me and trying to get information out of me. I found out because each one told me they contacted me because he mentioned me. Then they would ask identical series of questions and refuse to believe my answers. Then I’d get the creepy hang-up calls several times a day. I had to change my phone number, then immediately one of them tried to tell me it was urgent I contact him right away and only phone would do… yeah, no.
Another time, I found out that someone I’d considered a friend was trying hard to help someone who had repeatedly and blatantly threatened my life, attend my talks. His rationale was she hadn’t tried to kill me yet so everything was okay. (He also took the bizarre position that if someone had habitually abused and harassed people in one place, then every new place they go they should be given a clean slate until they do it again, and only then should they be thrown out.)
After many, many instances like that I realized I had to cut off contact with mutual friends for my own safety. I knew that some were probably not my friends at all. And the rest were in denial about the seriousness of what had happened and was happening to me. They didn’t want to believe it happened or didn’t want to believe it mattered.
I had at first not wanted to put anyone in the position of a forced choice between me and someone else. It seemed unfair. Maybe it is. But what is a thousand times worse is helping someone stalk or abuse or get away with abuse because you don’t want to believe it’s serious. I understand that it was confusing with one of these people because her habitual method of abusing people was to accuse them of stalking and impersonating her, and then to try to get the person as isolated from their community as possible with such accusations, before letting loose on them with a barrage of defamation, abuse, threats of violence or death, harassment, and stalking of her own. But from what people have told me, anyone remotely familiar with how sociopaths operate found her transparently manipulative and me transparently real. So still. Not that hard to tell which was which.
And yeah. In the past, I trusted people who tried to remain their friends. Now I don’t. Because every time I have trusted, I have found my privacy violated and my safety or life in jeopardy. Plus it’s horrible to know that a traumatic, life-altering experience for me that has resulted in long term damage to my mental and physical health and loss of friends and allies, is either denied, laughed about, minimized, or treated as something where everyone knows but nobody cares. That shit is just awful.
I am really sorry that this has happened to other people. I didn’t understand what betrayal meant because I’d never trusted, then I trusted and got this. Now it’s hard for me to even believe new friends are new friends — I almost didn’t meet my most intimate (not in a sexual or romantic wY) friend ever because I met her right as the stalking and accusations of impersonating people was really ramping up. And she was so very uncannily similar to me that I was certain someone must be setting me up again, as had already happened many times before. But she turned out to be real. It’s just hard to know, when you have had so many friends take an abuser’s side.
This is good, but seriously WTF. (And, rambling about caregivers and food.)
I hate the system. I just hate it.
I got my notice saying I’ll get food stamps and fuel assistance, and it’s not the highest amount but it’s a good amount.
Then attached to it was this notice saying “Fill out this really long form and send it in the next two days or you may not get food stamps after all.”
It had to do with my monthly medical expenses, including the medical debt I’m in (because IUDs apparently don’t count as necessary, even if it’s to prevent cancer when you aren’t having periods and you have a family history). Most of the documentation is at my case manager’s office. So I gave her the forms and she promised to get it in by today.
But seriously. WTF. I mean I know they deliberately put obstacles in your way so you’ll get disqualified and save money. But come on. If someone hadn’t collected the mail yesterday I’d be screwed.
Meanwhile they’ve sent me my EBT card but no pin number. They said the pin number is coming with the notice of how much I receive and stuff. Except, oops, it didn’t. So now I can’t access my food stamp money until… I don’t know when.
I hate the system.
In better news on the same topic:
I found out that Jessica, who works here on Fridays, is an amazing cook. I mean I already knew I love everything she makes. It’s always both healthy and really tasty. But I found out this past week that she is one of those people who not only doesn’t even need a recipe to cook, but can cook amazing food out of random cheap ingredients that are left over at the end of the month.
I haven’t had anyone who could do that in eight or nine years. And that person, unlike Jessica, was terrible. But she used her ability to shop cheap and cook excellent poor food, to stay in her job even when she was abusive and horrible. I still remember the screaming match when I refused to believe her when she said “Retarded people can’t learn anything, so you need to lie to them to manipulate them into doing what you want, because they could never understand the reality.” And I had to sit there and listen to her say shit like that in front of her adult son with an intellectual disability, while he looked miserable and resigned, because he knew full well what she was saying. (He lived in the same group home as my friend.)
Meanwhile she lied to me about other staff, because she wanted me to slowly grow afraid of everyone but her. She also used to say awful things to me until I broke down crying, and then hug me and tell me what an emotional breakthrough I was making with her. She also lied about why she was always in trouble with the office — she claimed it was because she had such radical ideas, but it was really because she was an asshole who lied and hurt people. Dealing with her was a nightmare but because of the food, I put up with her until she put her hands on me and tried to restrain me.
Fortunately Jessica has shown none of the awful qualities that person did. I hope she’ll stay for a long time, because people who can improvise really cheap food out of random stuff and make it work, are rare as hen’s teeth in this field. It’s hard enough to find people who can make oatmeal (which is my breakfast and lunch every day) without screwing it up. And even better, she loves doing it even though she doesn’t get to eat any. I guess it’s a creative thing for her.
Anyway, I hope once I get my pin number, my food situation will improve. And I hope I don’t lose my benefits before I find out, WTF.
I am realizing how far I’ve come in terms of services.
That last sub threw me back to a much earlier time in my receiving adult DD services. When them sending her with the amount of preparation she had would have been a step up from normal.
And yes she did eventually work out where I was, that my vocalizations aren’t random, and that the proper response to my synthesized speech was not to ignore it. It just took awhile. And it was a long shift. Probably for both of us. But we got through it.
I used to get IHSS (In Home Support Services) from this agency in California that cared nothing for its employees or its clients. In California I got some combination of IHSS, ILS (Independent Living Services), and SLS (Supported Living Services). But my IHSS agency, where my very first services came from, was just horrible. (I continued to get IHSS after getting ILS/SLS, but IHSS was the first, initially put in place to stop me from starving and living in utter filth. Well I still was hungry a lot of the time but less. And how filthy? The first worker who came in my house basically said “Oh my God, I’m not authorized to clean a place like this, I need to call and get them to send someone else.” It was bad.)
Nobody was sent over prepared by anybody with any information about me or what I needed. People would come over and ask things like “So what’s wrong with you?” especially if they saw me stimming. Which was usually.
The worst instance of preparation was the time they sent a woman over. She did not speak any language I could recognize. There was no interpreter. I could not run out and find someone to interpret because I couldn’t figure out what language she spoke. She had been given no instructions on what to do when she got here. I was terrible at using body language to explain things. This is what I mean when I say they did not give a shit about either employees or clients.
One time I had to cancel just before someone’s shift. Knowing how little people were paid and how draconian the policies, I asked if she was still getting work or payment that day. They literally said something on the order of “Who cares?” This is why I and other clients often signed time sheets for people who for some reason were prevented from doing the work.
(But then there were the people who used shifts as a coffee break. As in literally sat in my living room and drank coffee for a few hours. The agency didn’t really care that they weren’t doing any work at all. And I’m not talking about even doing a few things. I’m talking nothing but sitting and drinking coffee. Nothing at all. That was always great for getting really overloaded by people’s presence but not even having any food or anything to show for it. This was a studio apartment so there was no escaping anyone who was present.)
I also remember how much difference it made when I really could find an interpreter for people. The agency never provided one. But if I found someone willing to help out, I was happier, staff were happier, and more got done.
They also didn’t make sure staff had the skills necessary to help me. And I’m talking about like… the time someone cooked me dinner. I took a bite and almost threw up. They had cooked rice. Added in uncooked, rock hard beans. And then filled the whole thing with an amount of rock salt equal to the amount of rice. I’m not just talking food I don’t like, I’m talking food that’s not edible. This happened a lot. So sometimes the goal of preventing me from going hungry was more abstract than real.
This agency was truly just horrible in every way. It didn’t pay worth shit. It didn’t provide information to staff about me or what I needed done. It didn’t make sure they had the skills to do it. I was usually too stressed to communicate properly. And it didn’t really care about me or staff. Or even make a pretense of caring.
The problem was also that I was constantly expected to be grateful that I had anything at all. And combine that with the way that when something happens constantly it feels normal. I often didn’t feel like I deserved any better. Yet even in this state where I took way too much of this stuff as how things should be, I was constantly getting told I was too demanding and too militant and too aggressive. Not by the IHSS agency. They didn’t even care enough to say stuff like that. But certainly by ILS and SLS agencies. I once got told I had too much sense of entitlement when I expressed a desire to eat at least once every day of the week.
And in that regard I think I was also being punished for being fat. I had been stick thin while at the worst of my time before services. My bones poked painfully into anything I sat or laid on no matter what position. I began to get access to food on a more regular basis and I became fat. Because my body was trying to get the most out of every calorie. But food on a regular basis did not mean food at least once a day. It didn’t even mean junk food, most of my food was fairly healthy. But people repeatedly refused to believe I was going hungry because people who are five two and 170 pounds aren’t supposed to be experiencing hunger in any way. So instead people would tell me I needed to be grateful I got anything and that expecting to eat every day was being a Bad Client.
At any rate it seemed like any position other than boundless gratitude for crumbs was being bad in some way. Even when you just wanted some of the most basic things. You were supposed to shut up and take what they gave you even if your life was threatened.
Protest in Yonkers about the death of Corey Foster, who died of restraint in a residential facility after saying he couldn’t breathe. PLEASE spread the word
In a not too alternate universe this would be me. Several times over. I take it very seriously. Spread the word. Get there if you can. Tell others if you can’t. And if anyone says this was okay, just be glad I’m not in a room with you right now. No evidence of any wrongdoing, even with witnesses, my ass. And I’ve heard “If you can talk you can breathe” many times before… just before I stopped breathing. Fuck this culture that says its okay to abuse someone as long as they’re disabled and it’s called treatment. I’ve been at the bottom of those piles before and almost didn’t survive.
thank you for posting my son Corey Foster on your blog….on Friday May 18th 2012 we will be holding a protest in front of the Leake and watts school in Yonkers where my son was killed. This protest will be about awareness and to stop the abuse and deaths in our school. If you would like to join us the invitation is open. the address is 463 hawthorne blvd, yonkers ny. Once again thank you so much for your support and i hope to work with you in stopping the madness.
and Watts boy’s death: ‘I can’t breathe,’ boy shouts after staffers piled onto him, witness says
Apr. 19, 2012 - by Will David and James O’Rourke of lohud.com
Corey Foster, a 16-year-old resident who died Wednesday night at Leake and Watts residential treatment center, went into cardiac arrest while being restrained by staff who were trying to force him off a basketball court, according to two witnesses.
A half dozen staff piled onto Foster after he became angry, they said.“When they got off of him, he was on the ground and wasn’t responsive,” said Antonio Reeder, 17, a resident who said he saw the confrontation
Please click on the link below to read the full article.
My BADD posts. And an extra post just to not end on terrifying and depressing shit.
Not sure if I posted this yet here.
Both of the first two are about caregiver abuse. The first is about everyday abuses of power in caregiving relationships. The second is about caregivers who are serial killers.
BADD: Caregiver Abuse Takes Many Forms
BADD: Pulling Back Curtains
And finally a post about the Mother Tree because after topics like that it’s just necessary.
The Mother Tree At Ground Level
My brain is foggy.
But it’s not just disability-related.
My writing vacation is over. And I want to write something that’s disturbing but it’s very necessary for anyone who is disabled or cares at all about anyone who is. It’s information that is far from well-known about a very particular source of danger to disabled people. I found it in a book that is obscure, out of print, and usually expensive. And it cites sources because it’s that kind of book.
And those damn outposts in my head that I talked about in my post about the writing vacation. They want to piggyback a bunch of crap into the writing that would cause unnecessary emotional reactions. Like ones that would interfere with responding to the information in a useful way.
And of course I’m fighting this. And of course they’re fighting back. Because that’s what happens. But I refuse to put this information out into the world until I can do it right with a minimum of crap piggybacking on the actual message.
So my brain is really not working well today. Or if it’s working well, it’s doing so beneath a layer of senseless crud that I have trouble seeing through.
And like… this shit can sit there dormant in my head. And as long as I’m doing what it wants. Or not doing what it doesn’t want. Then I don’t notice. But then try to do something that it actively doesn’t want. And suddenly my head is full of fog, or feels like its vibrating or spinning, or otherwise incapacitating or disorienting.
I hate that I’ve ever been put into the position to have life experiences capable of leaving lasting “programs” in my head, that use my own brainpower to fight me with. Of course I suppose that’s how all oppression and abuse works. But it’s a real fucking violation of the worst sort.
Oh well. I’ve been slowly beating this stuff since I started recognizing what it is. Recognizing it, disobeying it, pulling it out, and throwing it away. For a long time I had only the most minimal outside support, and I thought I’d be stuck like that forever. But now… now I have a lot of people who understand how things like this work and who can help me. And I’ve even helped other people when I could.
And as I may have said in my last post about this. My worst day now is better than my best day when I started learning to pull this shit out of my head. So even though it never seems like it when I’m first getting a handle on a new outpost. I will get it out because I have always managed so far and things have gotten steadily better. And even before I get it out, I will figure out a way to decouple what I’m trying to write from the stuff that wants to render my writing useless or worse than useless.
This is why I would rather experience physical violence than the mental stuff. Physical violence has components that work like this, but mental and emotional violence are entirely based in this stuff.