It finally happened. I'm no longer a caregiver. I am relieved, but I have nowhere to go and lost.
On October 15th 2019, something horrible happened to our household. I never told anyone on this blog this, and I don't do regular updates but I'm horrible on the social media thing because of I'm a private person for the most part. On the evening of October 15th 2019, my brother, who has autism (like me, but of a lower level than me) just before dinner, had a seizure. I just completed my first aid training on a website on the Sunday before it happened.
It happened when I was settling in on Tuesday, after some days moving upstairs to in hopes of renting out the basement room. I left the door open just in case. Then I heard a faint sound of my mom saying “Ndee...Ndee”, due to my hypervilgilence where I get sensitive to certain sounds I got up and brought my phone. Almost immediately I saw my brother on the ground on the carpet shaking with him bleeding from the mouth. I knew what to do by instinct because my brother never suffered a seizure before by calling 911.
I told my mom I'm calling 911. As soon as the operator pickup ed the line, I told her “We need a ambulance now! My brother is having a seizure! He's bleeding through the mouth!” I couldn't hear what the operator saying because my mom tried to get him to breathe after the seizure,and she ended up having one of her fingers punctured because my brothers teeth/jaw was sealed shut during the seizure. She was screaming “WE NEED A AMBULANCE NOW!” “WE NEED ONE NOW!” “ MY SON IS HAVING A SEIZURE”, while trying to comfort him while he was face down on the ground. I could not hear what the operator was saying because my mom was screaming out of pain of of worry that my brother is not breathing. The entire call lasted ten minutes.
Luckily, the fire department, which was a volunteer fire department that is literary a stones throw from the house responded within 10 minutes. I told them what happened and directed them to the living room. My mom who told the paramedics everything and my brother, who was disorientated after seizure, after assessing the situation, went to the hospital. I didn't ate anything from the prepared dinner until the morning after.
I went there the next day in the afternoon, I saw my autistic brother laying down sleeping in drained after suffering a seizure. After I saw my brother, met the hospital staff supporting my brother and my mom. I went down to grab dinner: A simple hamburger with chips, and a soda. When my mom came down: I told her the honest truth: “The entire situation was traumatizing. I can't do this anymore. I need a long vacation.” She knew what was going on with me, and she knew the situation and she accepted the fact that it was time for me to go and have my own life.
At this point, I'm free. I'm free of caregiving for my parents and my brother. But I don't seem to belong in this society anymore. I'm unemployable in the IT field, barely have any social network, my only income is SSDI, and if I can't find a place to live I'll be homeless.
My brother will be fine, he has a group home to go to. He needs round the clock care at this point that my parents nor me can provide. My parents will be fine, they can finally get jobs, even temp jobs because they realize that they can’t rely on me anymore. For me I've sacrificed my career, my health, my social life, my future so they won't be in a homeless shelter, because their relatives won't help them. These same relatives didn’t even visit my brother for the past 7 days while he’s in the hospital.
If people think caregiving is so noble and admirable and heroic, where's the prizes and riches like the heroes in isekai light novels and anime? Where's my home and a place to live, after years of putting myself into poverty supporting my parents and my brother.
At this point, I'm packing up my stuff and finding a room for rent somewhere, because all the public housing and rent assistance programs are non-existent. If I can't find a room, I'll just have to be homeless., move remaining of my stuff in storage. I'll travel for a while, see the country, do whatever I wanted to do, before it completely falls apart in political strife.
But what I really want, as a person who is a caregiver for the past 5 years, to have somewhere to live, some place to turtle from a society that loves caregivers, but won't help them when they're done. That's what I want. While I might be relived, I'm lost. I merely exist, but I don't belong on this earth, because my future is has been robbed is gone forever.
There are no resources or support for ex-caregivers like me, especially those who have autism/aspergers, to have a fresh start in life.
All I want to do is to rest for every year I've been caregiving for my parents and brother. I want to do everything I wanted to do before I was forced to caregive for the past 5 years, for the times I have to push through despite running on empty for the past 2 years. And for the times that I’ve been mentally and emotionally fatigued.
That is my wish: The rest and slowly recover so I can have a new life.