carmine1809Contributor
tips on dealing with a sibling with potential aspergers in extreme times
hello Sane community!
wanted to hop on and write a bit about my week since it was quite heavy and for once in my life i think i genuinely feel physically exhausted.
earlier this week my mum had a severe shivering episode (she has cancer and the chemo has been really getting her down). i came home one night and she called me from her room to grab her another blanket which i did, but i felt really concerned since shivering and fever is a sign of infection. i felt afraid at the time to do anything else + i didn't really know what to do. i was worried so i called up 13 HEALTH for advice, and the nurse on the phone walked me through, take her temperature etc. which i did with a probe stick, but in hindsight i'm pretty sure i took her temp incorrectly. anyway it read 37.5deg which was approaching the 38deg rule that if a cancer patient is at this or over, they should go to the ER immediately. based on what my mum was saying to me at the time she said she was just cold and it should be okay. i checked on her later in the night like an hour later and she was sound asleep and not shivering so i felt a sense of relief? in the morning i briefed my brother in (he is 10 years older than me and my mum suspects aspergers since he's got quite low EQ and not so great communicating skills) i thought he should be in the loop.
he was being quite unhelpful when i briefed him in what happened the night before saying things like, we need an advanced medical directive to deal with this (but it's like well we don't, so what are we just going to let her die right now?) and other things like physically it'll be good for her to go to the hospital but spiritually it's not. i find this piece of advice extremely unhelpful in this moment as he has also said previously that he learned from a course that people who are dying will never tell you what they actually want because they don't want to be a burden and spiritually she doesn't want to bother me. i just don't understand this angle at all, like yes if we had all the checks and directives in place, i would let her do what she wants to do. but in the end we don't, so why are we throwing in the towel in the first go? he was also saying things like i should be respecting my mums decision because it's her body, which i do understand but at this point i really didn't think my mum was quite ready to go just like that.
in the end, my mums condition became a very severe emergency, the doctors confirmed sepsis (and later cold septic shock) and a bunch of other problems that were life threatening by themselves individually, and my mum happened to have all of them at the same time. as she made it to the ICU and the next day passed, she felt a tiny bit better but still extremely tired. she said to me she was extremely grateful that i made the executive decision to take her to the hospital. it made me feel appreciated for a second but i just feel like shit because i wish i didn't have to REASON with my brother to get to this point?
we're in a better position now in terms of my mums medical state and all the doctors are extremely impressed and she's really defied all odds of death. i feel so so wiped from going in and out of the hospital all week, bracing for impact (because the ER doctor in the beginning actually told us that my mum only has 2 days MAX left after reviewing her scans) and the lasting effects of dealing with my brother is so draining. i always try to take what he says at face value and not personally because i think he generally does have good intentions all the time, but the execution and way of communicating it to me really hurts sometimes.
i just hope we can work together more as a team and he understands that he can lean on me if he needs to so he doesn't need to carry every single responsibility. we are also organising all the end of life related paperwork and pall care for mum now so hopfeully i won't have to be in this difficult position unequipped again.
mum has made it out of the ICU now, fingers crossed we continue to leave the woods from here on out. a big appreciation to modern medicine and all the professionals involved.
