Why I Am in Long-Term Care

The day 1 prompt for this year’s 31-day writing challenge is “Why”. I immediately thought of the question that keeps popping up in my mind whenever I meet someone new at the care facility: Why am I in long-term care? Today, for example, I met a student doctor who was touring our home. I informed her midway through our conversation that I don’t have an intellectual disability, to which she replied that she could tell. Well, duh! Even when I’m overloaded, like I was at the time, and experiencing pretty bad language problems, I still sound like someone with at least an average IQ.

So why am I in long-term care? To a casual stranger, I could just point to my lack of sight and they’d be satisfied. Not a doctor or even a medical student, I guess. The medical advisor for the funding agency understandably concluded that blindness alone doesn’t warrant 24-hour care. Neither does mild cerebral palsy. And, as regular readers of this blog know, autism, being seen as a psychiatric condition, doesn’t count.

They finally found a way around this situation by saying that my disabilities are intertwined. They are, of course. In multiple disabilities, the whole is more than the sum of its parts. For this reason, the short answer to why I’m in long-term care is because I’m blind and autistic and have mild CP, not because I have any of these alone.

This is the legal answer. The way the funding agency found around the stupidly close-minded look at disabilities the law requires medical advisors to have. The long answer is, of course, that my individual care needs mean I need 24-hour proximity of care.

I have significant executive functioning issues. These cannot be objectified by tests because I’m blind and the tests of executive functioning that are available, are all visual. For this reason, the medical advisor wrongly concluded that I don’t have cognitive impairments. I don’t have an intellectual disability, but that’s not the same.

These executive functioning difficulties make it hard for me to take care of myself. I can do basic self-care activities with reminders and prompting, but then still I often mess up.

People, including my support staff, have used my blindness as an excuse for my difficulty with basic self-care. Of course I can’t see when my clothes are dirty, but if I were just blind, I would be able to prevent the most common causes of my clothes getting dirty. Like, I would be able to prevent myself from drooling over them, or I would be able to find other ways around it.

People also use my blindness as an excuse for my needing proximity of care. If I were just blind though, I would still struggle to know when staff had left the room, but I wouldn’t feel overwhelmed by it.

But I’m not just blind. Had I been just blind, I wouldn’t have needed to apply for long-term care. And yet, paradoxically, my care ground is blindness.

6 thoughts on “Why I Am in Long-Term Care

  1. Yes,

    there’s a real continuum and overlap between cognitive impairment and intellectual disability.

    Which the good and the great often see – and interpret.

    I am not great. I am not even very good; as you’ll perceive in the next paragraph.

    The usual practice is that you’re not supposed to have ID/DD after you’re 18/22/25. Then you get dementia [as public health officer Chris Borthwick so charmingly puts it] – and dementia, of course, is like the queen of cognitive impairment.

    Yes – the thinking about cause and effect.

    And CP gives people an extreme disadvantage when it comes to drooling and other saliva explosions. Bulbar and pseudobulbar stuff too.

    Still the Dutch government considers you blind-plus which is more than you had before. I suppose they argue you wouldn’t have the other stuff you do if you weren’t born blind or diagnosed with blindness very early.

    What would happen if developed nations said that prematurity and its comicontant effects were a care ground?

    And my why is – “Why do you continue to say you don’t have an intellectual disability?”

    These visually-based executive function assessments are not fun; they are not free and they are not fair.

    Developmental amentia; dementia and the age of majority

    Developmental amentia and language

    [as people will learn I followed the example of neurologists when it comes to what kind of “mentia”/”mentium” is described].

    Liked by 2 people

      1. I had Gillian beret disease for six months. I was paralyzed from the neck down in ICU and rehab.

        I was totally helpless, could not move, or take care of body functions

        It was incredibly humbling

        Also I am a chronic pain patient and part of a chronic pain group.

        A nurse informed me how people look at us chronic pain patients, we are supposed whiners

        Well I made sure I kept my suffering to myself

        You have to stand up for yourself

        Some caregivers are not respectful

        It was a challenging time

        You have found your voice and willpower

        As I said you inspire me with your spirit

        Liked by 1 person

  2. You are absolutely outstanding, wow. Thank you for giving such an insight. I’ve always stood by the saying that autism just means you’re extra good at other things, in your case your writing is exceptional! Better than most.

    Liked by 1 person

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