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NeuroDamaged3

NeuroDamaged3

Member
Apr 4, 2021
30
Hi,

It seems as though my medicine is wearing off and there aren't really much options left for living alone. My mother or father won't take me in, not because I cause drama or anything but because I'm not able to be functionally useful. My 'good days' in the past few months have been being able to lie in bed content with reading, because I simply can't spend much time out of bed - no energy or drive. When I first started Clonazepam February 2020, I was able to be functional like a normal person, but this slowly faded. At least the akathesia was gone. But then in november last fall I basically fell into a slump where I was bedbound except for basic care all winter. This is still much better compared to the constant Akathesia I had before taking my current med but now its wearing off and there are no real alternatives. Recently, my akathesia is peeking its head out with the associated agitation and inability to focus, some anxiety (not emotional but on a deeper, inner level that comes with akathesia. Its like a physical anxiety rather than emotion).

If I go back to my old, baseline, no-meds condition it'll be much worse than if I hadn't been on this med, and back then i slept 2-3 hours a night at best, and paced about 12-16 hours a day or more, with only breaks to sit and rock in bed. Unable to do anything else really, except drink water as i pace and somewhat eat food. At that time I was living with my mother but she hated my inability to 'get better' or such, had no understanding or willingness to understand, etc. I ended up having to move out. Part of me wishes I didn't, maybe she wouldn't have actually kicked me out and I could still live there, but it was getting bad - she actively resented my presence.

Anyways, it seems like I'll probably need to go to a permanent care home. Group home wouldn't be enough support, it'd have to be a full support home. I don't even know if I qualify for them but my condition is permanent and I need somewhere to go.

If anyone else is or has read of people in this situation (Im 29, really young to be in a nursing or care home), please let me know. I hope it isn't the hell I imagine, with nurses that don't care and left to be alone and suffering. I know group homes are terrible but I'm hoping the actual full care homes are better. Also, Im in Canada if that helps.

Ps. tried to CTB already but my brains been so wrecked by all the 'drugs' and 'treatments' and the actual failed attempts that I no longer possess the ability to try. All I feel towards death is fear now. It used to feel like the ultimate relief, a permanent way out of daily pacing and suffering.
 
Last edited:
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Reactions: WaterHemlock, newave3 and Mentalmick
N

noaccount

Enlightened
Oct 26, 2019
1,099
I am so sorry.
Do you have disability income, and could you pay for home attendants to come to where you live sometimes?
Jonathan Marchand has been fighting for access to home-care and to get out of a nursing home for years - check out his work:
/
 
NeuroDamaged3

NeuroDamaged3

Member
Apr 4, 2021
30
I have disability income but just enough to get by every month. I can't afford home attendants, my family is not well off.

If the akathisia gets bad its almost 24/7 hell, a live-in nurse would be unaffordable.

Right now all I can do is live in my apartment but I can't take proper care of it or myself.
 
Last edited:
N

noaccount

Enlightened
Oct 26, 2019
1,099
I am so sorry akathisia is horrible. :(
March Of Dimes is able to pay for home care sometimes I think?
 

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