Posted in Developmental disability, Developmental disability service system, food, HCBS, medical, Self-advocacy, tube feeding

They’re withholding access to food.

The only food I officially, reliably have access to right now is food that doesn’t work. I don’t mean food I could make work if I fudged it a little, I mean food that I can’t sustainably live on or can’t get down my tube or things like that. I just don’t have the energy or ability to explain all the details. I don’t want anyone to think there’s an obvious easy solution just because I didn’t explain it, and I don’t want pressure to explain, I can’t take any more pressure right now.

WHAT MATTERS HERE: HOWARD CENTER DEVELOPMENTAL SERVICES IS PREVENTING ME FROM EATING.

Longer version (but still even after writing all this can’t explain the complicated food prep logistics and those are NOT the focus of this post, just be aware they’re real and every day we wait to solve this creates WAY more problems):

Doctors and a nutritionist have written orders saying I can bring cafeteria food home from the hospital, blend it into J-tube-friendly soup, and bring it back to hang in my feeding pump, or else buy and make the food all on their own and bring it in. This may have taken a lot of work on their part because hospital policy is that we’re required to be on an impossible feeding formula.

Howard staff are used to doing things like this. If I were home this were restaurant food (and the menu here is that good, easily, as well as designed in a way that fits my dietary needs perfectly well), Howard would not object to staff doing this kind of thing. If I bought it from the hospital cafeteria and brought it home, Howard would not and has not in the past objected to staff doing this. Staff know how to make food into soup. It’s part of their job. They’re good at this. The cafeteria version eliminates most of the work that Howard staff would generally have to do — they don’t have to prepare a meal, they don’t have to ensure my safety while I prepare the meal, etc. All they have to do is the part they always do anyway (because it’s the hardest part for me to pull off physically) — use a blender and a chinois. A blender and a chinois the hospital kitchen doesn’t have, and that violate hospital policy for me to bring in.

So basically it’s easy.

And Howard won’t do it.

They refuse to do it.

Which means I can’t eat safely until someone finds another solution.

I actually had this conversation with my case manager today (roughly paraphrased):

CASE MANAGER: It’s taken care of anyway if the kitchen is willing to give you a puréed diet.

ME: They can’t guarantee that the puréed diet is safe to go through a J-tube.

CASE MANAGER: Then they didn’t agree to give you a puréed diet.

ME: Yes they did. They just don’t know if their blenders are good enough.

CASE MANAGER: If they can’t guarantee their blenders are safe, they didn’t agree to give you the puréed diet.

ME: They not only agreed, they require me to on the puréed diet now, and they don’t know yet whether their blenders are good enough because we haven’t tested them yet!

CASE MANAGER: That means they didn’t agree…

ME: You’re expecting reality to work like some kind of logic game. This is the real world. It doesn’t do that.

And he utterly refused to address the fact that it was 10 minutes from the end of the business day, I needed to eat that night, my other case manager wasn’t answering the phone, and it was apparently her department not his so there was absolutely nothing he could do.

There’s always absolutely nothing they can do, and they always say something to justify whatever’s going on, even though it makes no sense.

Right now everyone’s big one is “Someone else is handling this.” I’m a hot potato and I’m someone else’s problem and it’s going to be the death of me.

And I’m not okay with that.

The puréed diet does not fit through the feeding pump. Eating long-term without the feeding pump ranges from impossible to hazardous to my health. Eating short-term without the feeding pump for a few days has already proved impossible. Forcing me onto the puréed diet forces me onto a diet that isn’t even compatible with my body long-term. (There’s no vegetarian puréed diet balanced in the way the non-puréed main patient menu I was using before is balanced, which is perfect to my needs. The only way I can eat non-vegetarian food is in a way that isn’t safe. The few vegetarian protein options in the puréed diet are things that won’t work to get what I need. It’s complicated, but suffice to say this is not actually a solution at all.)

I have already been making do with the best things I can as a temporary thing for the last few days.

I can’t sustain that.

I’m getting weak.

I was having trouble breathing earlier. Not my usual recent trouble breathing. Weak breathing muscles. That can be neuromuscular, or adrenal insufficiency, or other things, but it’s related to the weakness from not eating.

I’m dizzy and light-headed all the time.

I’m starting to have more trouble thinking than I have since I first got here.

I can lose the physical and mental capacities necessary to fight this, fast and easily.

My health is like a house of cards. And they’re pulling out the bottom.

They’ll claim to have their reasons. I already know their original claims. It’s all bullshit.

Howard wants to get rid of as many of its high-medical-needs clients as they can.

Nursing homes, the VNA, anywhere they can manage.

We’re expensive and difficult. They don’t want us.

Everything else is excuses.

Tonight, I found some stuff in the fridge. I’m eating the last of it right now, the right way, through my J-tube, with the hang-bag.

Howard staff have now been disallowed from going back into my home to help me get things. So I am not even allowed to have them bring the blender and chinois here without using them in case I could persuade the hospital to use them. (It’s unlikely I could, but I can’t even bring them because nobody’s allowed back at my place.)

They were plenty allowed to go back there when they had a cat to feed.

Now that the cat has another home, they aren’t allowed to go back.

Except, except, to check the mail.

But not into my apartment. Even though one of them found an important delivery inside my apartment without which I’d have a lot less problems. Even though I have things I need inside my apartment.

I am no longer allowed to decide what I need to get from my apartment.

It’s entirely up to my case managers.

This is not about my safety. It’s not even about their fears of liability, although that sounds plausible at first glance.

This is about them using and proving their power. And ultimately it’s about them trying to shove me out a door.

All this time ever since they started this bullshit, they have been holding a door open with one hand and shoving us with the other.

They did it until my back broke. They kept doing it even knowing my back was broken.

(That my back was broken is no surprise to them. The first stress fracture, T11, was something very very prominent in arguments with them over the years about the ethics of their actions and formal complaints of medical neglect. None of this is a surprise to them.)

They are claiming that my abilities are getting less and less, just magically.

Really, they are taking away every support I have and then claiming that the resulting situation is just naturally what would happen to me anyway.

This is evil, this is vile, this is wrong, this is truly truly evil.

I’m hungry. I’m hungry. I’m hungry. I’m hungry. I’m hungry.

I’m fucking eating and i’m hungry.

Because another fun fact: It takes time for my body to notice it’s eating again.

Like, when I’m my healthiest, it runs like this:

I forget to eat for a night, or can’t because of an upcoming surgery, or something.

I immediately eat perfectly well exactly what I’m supposed to and how I’m supposed to, the next night.

There’s still a few days lag time before I’m feeling okay.

That’s when I’m at my best.

That’s because when you eat through a feeding pump, the food goes in really slow. Like it can take 12 hours to get a 1-liter bag of food, possibly. I usually do this at night. Faster usually, but not always, it depends how my guts are working. But still not fast exactly.

So it’s not going in at the normal rate, and it just takes time for your body to react to the combination of not eating, eating again, and the whole pattern of getting food and not getting food involved.

I’m currently eating at 100 mL per hour. That means in roughly an hour or two, I will be out of any source of a balanced diet until this problem is solved.

Also understand that it’s not like I got a full liter. What I’m eating tonight is one meal. Like one cafeteria meal. Not a full day’s meals. So this isn’t even caught up by those standards.

I am better with the food but I can’t do any of this without being able to get roughly three balanced meals a day through my blender and chinois. I can’t do that without someone’s cooperation.

The doctors are doing the best they can. The nutritionist did the best he could. They wrote the orders. They got approval. The only people standing in the way of me and food right now are Howard Center. And I’m not asking Howard to do anything they haven’t done, been told to do even, before.

That means they have a responsibility to make sure I get fed.

They are not feeding me.

They are the only ones at this point not feeding me.

Nobody else needs to change anything anymore. Only them.

THEY WON’T FEED ME.

I NEED FOOD TO LIVE.

I need food to heal from this injury. Until today, I was walking more and more every day. Today I didn’t have the energy to go out walking at all.

They will go out of their way to do things that will manipulate me into leaving their independent living program.

Meaning — they will go out of their way, go to great lengths, to help me, if they think the help will encourage me to leave.

But if refusing help will manipulate me, they’ll do that too.

And they do it all the time.

And they’re doing it right now.

This is part of their ongoing pattern of doing less and less for me and then acting like they’re staying the same and I’m changing.

And they’re doing this to all of us in various ways.

Other people they’ll take out the supports, and if the person manages without them, say “You don’t need our support anymore, so you don’t need services.” Even if they do.

Other people it’s more like me, they take out the supports, then tell us how inviting and wonderful all these other programs are — Shared Living, VNA, nursing homes, group homes, assisted living, whatever.

I’m getting really tired.

When I fall asleep, I don’t know what I’ll wake up to.

I don’t know what my food reality is gonna be.

Howard doesn’t want me.

That’s what this is about.

It’s about trying to shove me out the door.

It’s not that they necessarily want to kill me even though it sometimes looks exactly like that.

It’s that enough of them — and the agency as a whole — just don’t care about that part or have convinced themselves that if it happens it would’ve happened anyway and/or isn’t their responsibility.

The hospital is the perfect place to make me lose everything.

I’m in a holding pattern.

They can take things away, but the hospital will try and step in and keep me alive. If the hospital for any reason fails to do so, then “obviously” everyone did everything they could and the “real cause” of my death is just that I have a crappy body that was gonna die anyway. Everyone can feel sad or pretend to feel sad and nobody has to feel guilty.

Meanwhile, if the hospital does keep me alive, which it probably will, then I’m nobody’s problem anymore.

People at the hospital (they don’t all agree) are saying i’m rehab’s problem and/or that I can maybe get better and go home (or be declared better because of walking regardless of preparedness for home or whether I’m actually healed) and be Howard’s problem again. Rehab is saying I’m Howard’s problem entirely and they shouldn’t be required to deal with me at all. Howard is saying I’m the hospital and rehab’s problem.

They can pass me around in circles.

It’s hot potato and musical chairs and Somebody Else’s Problem all mixed together.

Musical chairs because when they pass me around in circles, the supports that keep me alive, as well as the supports that keep me living in freedom, disappear.

One by one by one by one by one out from under me, faster and faster.

Their endgame is diabolical.

Understand, also:

Ever since I have got here, every word I have posted online has cost me physically or mentally or both, usually both.

Writing this is exhausting.

Exhaustion is not safe for me right now.

I have chosen to put myself at risk to write everything I have written, for a reason.

I’m getting more wiped out.

I’m doing a lot of this writing because I want people to know what’s happening to me and other people in my position. Because I am not unique. Because I care about people and I want to contribute certain things to the world and these things all matter to me.

So it’s not that this is easy. And it’s not that it’s without cost. And it’s not that it’s always even possible. I write when it’s possible combined with other factors. I haven’t been capable of this in awhile. I may stop being capable of it again. I don’t know.

But it matters to me. A lot. And that’s why I do it. And sometimes the reasons it matters may be obvious. And sometimes they may not. But they’re always there, even, or sometimes especially, when something seems frivolous.

But this isn’t an ability that I have on demand. And it never ever comes without a cost even when I can push myself into it. And when I do choose to do this over spending my energy on something else, there’s always a very good reason.

No matter what happens, don’t let my efforts be wasted.

But mostly, right now, I want a guarantee that I can eat whatever I need to eat however I need to eat it whether that stays the same or changes or is complicated or simple.

I’m really really really really really really really hungry.

And being hungry affects me in ways it doesn’t affect healthy people, faster than it affects healthy people. (And no being fat doesn’t mean being hungry or not eating like this, is healthy. Ever.)

And like everything I’m frustrated by the fact my body does this thing where it looks reasonably okay until it’s way not okay. When will people realize by the time they can see something going massively wrong, something is already going massively wrong? They’re not always gonna see it creeping up (although sometimes they can, and just don’t). Sometimes it’s gonna look like nothing happened until it did.

And it’d all be easier for me and them if they took steps early on instead of waiting until things got horrible.

Of course given some of the horrible things I’ve witnessed in this place, that shouldn’t be a surprise, but…

I’m hungry. I’m just hungry. Everything right now just comes back to I’m hungry.

I’M HUNGRY.

How many ways are they gonna break my body before it just breaks completely? Because that’s where all this is headed, and I saw it a long time ago, and so have a lot of people close to the situation, inside and outside Howard.

This kind of thing is happening to lots of people.

I’M HUNGRY.

Author:

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

3 thoughts on “They’re withholding access to food.

  1. Is there anyone you would want people to contact on your behalf that wouldn’t risk making your situation worse or incurring retribution? Do you need legal help or someone there to help advocate?

    I’m thinking even like calling the state attorney general’s office…

    Liked by 2 people

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