Teaching3bears Posted April 29 Posted April 29 (edited) DS22 (severe special needs)has had increased seizures lately. In the past he would sleep after seizures but now he gets agitated and runs out of his room. I can get him to go back but then comes out 30 seconds later. This is all happening through the night and in the early morning. This morning he came out before his seizure and I had to catch him on the bathroom floor when I had just woken and jumped out of bed. It is unreal. The doctor does not seem too confident that there are good meds for him. I have to make another appointment. I am not looking for solutions right now. I am just feeling very dizzy and frustrated right now and want to complain. I can’t even write this because he keeps getting up. I am spending more and more of my hours absolutely uselessly having to deal with stuff like this. I am trying to figure out how I can have a shower this morning. Edited April 29 by Teaching3bears To add 50 Quote
maize Posted April 29 Posted April 29 @Teaching3bears that is so very hard. Do you receive caregiver compensation at all for all the time you put into caring for special needs? 1 Quote
MercyA Posted April 29 Posted April 29 Hugs and love to you. I hope you are both able to rest today. 1 Quote
Teaching3bears Posted April 29 Author Posted April 29 28 minutes ago, maize said: @Teaching3bears that is so very hard. Do you receive caregiver compensation at all for all the time you put into caring for special needs? Nooo Quote
maize Posted April 29 Posted April 29 8 minutes ago, Teaching3bears said: Nooo Is such a thing available in your state? It exists in my state but is so underfunded that the waitlist is more than a decade long. Many states are better though. 2 Quote
Kassia Posted April 29 Posted April 29 I'm so sorry. I can't even imagine how difficult that must be - especially with no sleep. Our county provides respite care in some cases, but I don't know if that would even be possible in your situation. 3 Quote
Teaching3bears Posted April 29 Author Posted April 29 I am doing better now and so is he. I do get respite but I just don’t know all the behaviours/seizures will happen and I have to ask for the workers about a week in advance. Plus, it is a random assortment of strangers and it is hard to have strangers in your house during pyjama time if you don’t live in a big house. 5 Quote
Teaching3bears Posted April 29 Author Posted April 29 4 hours ago, maize said: Is such a thing available in your state? It exists in my state but is so underfunded that the waitlist is more than a decade long. Many states are better though. I can get funding for others to care for them but not myself. 4 Quote
mommyoffive Posted April 29 Posted April 29 I am so sorry. I hope you get some rest and his seizures calm down. I am glad the day got better. Quote
Hannah Posted April 29 Posted April 29 (((Hugs))) I can’t begin to imagine how weary you must feel. in spite of how awkward it is, please make use of any respite and help offered. Self-care is essential to be able to offer care. 2 Quote
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