u/Unashamed_Outrage

First, I want to thank everyone who has responded to my previous posts that were really rants/vents about caregivers in my home, as well as issues that I was encountering. I wasn't able to respond, but I did read all the comments and appreciate everyone who responded. This, is kinda along the same lines.

I have been very ill for over a year. I had heart surgery in June last year, and I was worried about it, because I was being intubated. I thought discussing the issues with the head anesthesiologist would be beneficial, but I just learned that none of that information actually got to the treating anesthesiologist. Basically, he went ahead like I was some normal person without airway risk.

The issue is that I have a very rare autoimmune disease. This autoimmune disease attacks cartilage and I was always told by my rheumatologist that the airway is the part of the body that you have to protect, because total airway collapse is possible, as is airway stenosis, which is like narrowing/rigidity of the airway. So, when I learned I was going to be intubated, I panicked, talked to the surgeon about my concerns, talked at length with the anesthesiologist, explaining why my airway was at risk during intubation.

Two weeks after that heart surgery, even though they "fixed" my heart, I knew something was wrong. I couldn't breathe very easily. It was like I had to work harder to get a breath, and I could no longer breathe deeply or even yawn. I told doctor after doctor and was told I needed to lose weight, or it was my heart, or asthma. I had one doctor confirm SEVERE inflammation in my throat, but even still the rheumatologist wouldn't treat me. He later dismissed me and I was without care for 9 months.

Now I have care, three new specialists, and their immediate diagnosis was vocal cord dysfunction. By itself this is treatable and you can get better. With my autoimmune disease, you cannot. There is no hope of getting better because the cartilage is fragile from the disease and if it is damaged, you're just basically SOL. It's progressive and yes there are meds that can delay further damage, but they are harsh meds, that I am now on.

So, a little over a month ago, I learned about this diagnosis, was told I need to prepare myself for a tracheotomy, because that will happen if I want to live for very long. And that I will likely need a stomach feeding tube.

Why?

Well, it's because my vocal cords aren't working right and so I choke too easily and for no reason, but also any type of exertion, including talking makes it so I cannot breathe. I don't just mean that I can't breathe while it is happening, I mean for hours and hours after I talk or exert (like walking to the bathroom). It's like I'm gasping for air, just hoping my vocal cords will start working right so I can breathe easier.

So, I got proactive and was like...ok, I can't talk and I can't exert. I am supposed to have caregivers, so I decided to make a PowerPoint that was easier to follow than my written directions. However, this was refused by the caregiving agency. They said I was trying to train the caregivers using a PowerPoint, when that wasn't my job. I explained the PowerPoint was just explaining my house rules, like don't make me talk, don't let out my cats, etc. It was like a movie they could watch. But also, the PowerPoints discussed what I needed done that day, in a way that the caregivers could read and go back and forth to make sure they understood everything I needed. The caregiving agency said it didn't matter, that I could speak to the caregivers, if I needed to tell them anything. It's like they didn't understand that talking could literally kill me.

Anyway, last week, I learned the agency might have a caregiver for me starting this coming Monday. Then I received a cancellation letter, saying they no longer felt I should be their client and dismissed me from care. Like the day after they told me they might have a caregiver.

I'm upset, so upset. I never really understood how important talking was for everything in life, like everything. I want to talk, but if I do, I know I could end up suffocating because of my vocal cords. It is such a horrible place to be in.

I also don't have anyone to help me. Like no one. I thought I had friends, you know? Like I thought these people who talked to me were my friends. They would come over and hang out, or whatever, but then I realized it always came with their wants, or needs. Like...hey, can you loan me money? Hey, can I sleep on your couch? Hey, can you help me with this business plan or making business cards? And I realized that once I was unable to do anything for them, that they stopped contacting me or coming over.

I don't have family to help me, either. It's a very lonely place.

Anyway, I'm not sure what to do, but also, I don't think I could exist with a trach or feeding tube. I don't know. Just the thought is horrifying, but also, what if I can't even have a trach because of this autoimmune disease? What if it just destroys all the cartilage in my throat and I went through the pain and suffering of getting it?

Not sure the point of this post. Mostly venting, I think. I'm just sorta sad and discouraged, but I don't want despair creeping in.

First, ChatGPT told me about ElevenLabs and I will be eternally grateful. I have progressive disease affecting my larynx, along with vocal cord dysfunction that makes speaking difficult and medically dangerous for me. This is a recent, and very distressing diagnosis for me.

Finding ElevenLabs has opened doors for me, because I am using it as an assistive communication program. I just learned how I can use it in phone calls and I am so thankful.

I know people use ElevenLabs in different ways, but for me, using it this way is making communication easier...and I can hear my voice, my old voice that was recorded before things started going so bad for me, which is lovely and devastating at the same time.

Thank you so much!!!

I receive in home caregiving services, and I’m trying to process something that recently happened.

Because of my disability, my ability to talk and hear fluctuates. It is not constant or predictable. Sometimes I can communicate verbally, but other times talking, hearing, processing speech, or repeatedly explaining things worsens my symptoms. I can end up with no voice, no hearing, brain fog, head pressure, severe fatigue, and a crash from overexertion.

Because of that, I use written instructions and checklists for caregivers. They are not meant to be controlling or insulting. They are an accessibility tool so I don’t have to verbally manage every task while already sick.

Recently, a caregiver came to my home, refused to read anything I had written, and left after about 15 minutes. From my perspective, she refused to use the accommodation I rely on to communicate my needs. The agency was upset with me, though, and told me that I made her cry because I was mean and expected her to read written instruction.

I later found out that some caregivers from this agency may not know how to read at all, and many others don't know how to read well. I understand adult illiteracy can happen for many reasons, and I’m not trying to shame people for learning barriers. But I also don’t understand how it is acceptable to send caregivers into disabled people’s homes if they cannot read care instructions, safety notes, labels, directions, or checklists.

The instructions are basic things like...don’t let the cats outside, close cabinets and drawers, put things back where they belong, follow the checklist, and don’t make me repeatedly explain things that are already written down. I also created a list of where things go, or where to find things like the vacuum or hygiene supplies.

I was told by this agency that I would have to accommodate their caregivers and would have to program AI, such as Alexa or a chatbot, if I was "unwilling" to talk to answer basic questions from the caregivers.

I’m not asking for perfection. But I do think being able to read and follow basic written instructions should be a reasonable expectation for in home care, especially when the client’s disability makes verbal communication unreliable.

Has anyone else dealt with being labeled difficult for needing written instructions followed? How do you explain that checklists are an accommodation, not micromanaging?

I am in the process of changing to another agency, but in the meantime, I'm not sure what to do. I also want to add that, normally, I'm a very social person, so not being able to consistently hear and talk is really devastating to me. It isn't a preference to not speak to the caregivers, it's a necessity.

I'm trying to challenge my own thinking and would like honest perspectives.

I struggle about how I should think about adult illiteracy. Part of me feels that if someone is in their 30s or older, and still can't read, especially in a country where adult education and general education classes are often available for free, then it reflects something about their judgment, motivation, critical thinking, or intelligence.

My reasoning is that reading is such a fundamental life skill that an intelligent adult would recognize how important it is and seek help, even if learning was difficult. There are also tools and accommodations for things, such as dyslexia, so I have trouble understanding why an adult would remain unable to read.

At the same time, I know this may be an unfair or overly simplistic view and I may not understand the barriers they face.

I used to teach adults who only had schooling to 3rd grade, while working towards their GEDs, and seeing people make that effort may affect how I view adults who do not.

So, I'm asking for some honest input about connecting adult illiteracy with poor judgment, low motivation, or lack of intelligent. And input about reasons an intelligent adult might remain unable to read even when resources exist.

I also really need help with how to think about this in a way that is realistic, but not cruel or classist.