u/captain_vee

▲ 11 r/CJD

My aunt has CJD and I was not prepared to see how bad she actually is

My aunt had symptoms starting on 3/27. For weeks after, my mom was texting and talking on the phone with her and other than some hearing loss she seemed fine. The last coherent text my mom got from my aunt was on Mother’s Day. I am so lucky I just happened to be traveling to the part of the country that my aunt lives in (we live on opposite coasts). I got to visit her to say goodbye today and it was so hard. I think all I can do is listen to everything

  1. My uncle mentioned she was hard of hearing and that we needed to talk loud and slow

  2. We saw her today and it was so much worse than that. She couldn’t walk on her own. She couldn’t form sentences. She forgot words or used wrong words or nonsense words

  3. She had a phone app that transcribed what we were saying, but reading seemed too hard for her and she didn’t understand she had to keep scrolling once the text reached the bottom of the screen

  4. My grandma is 96 but not doing well. We don’t know if/how we should tell her. My aunt is only in her mid 60s

  5. Her husband does not give her a chance to talk. I could tell she was trying to speak but just needed more time. He didn’t give it to her. He dominated the conversation when we were there to see my aunt

  6. I think he makes her feel bad. She apologized after he mentioned he had to miss a meeting to stay home and care for her. He talks about her in front of her and I think it embarrasses her sometimes

  7. My uncle has only told my mom and his kids. There are two other sisters who have no idea my aunt is dying! Time is precious and my other aunts are being robbed of the ability to say goodbye to their sister

  8. Perhaps worst of all - MY UNCLE HAS NOT TOLD MY AUNT HER PROGNOSIS. My aunt keeps saying “I’m going to get better.” She has no idea and therefore no chance to say her goodbyes or anything

I hate the way my uncle is handling this situation. I didn’t like the way i saw him treat her and i am enraged that he is hiding this from everyone. I know part of my anger is misplaced grief but i also know that some anger is appropriate in this situation.

I’ve made my thoughts on all of this clear to my mom. I think she can tell the sisters at least.

Thanks for reading. I am just devastated and shocked and angry

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u/captain_vee — 5 days ago

I am a financial analyst. One of my responsibilities is projecting how much of a given product we’re anticipated to sell when we launch new limited time offers. This deliverable goes to my supply chain partners.

In my experience, working with supply chain is usually absolute hell. They have been incredibly demanding with unreasonable deadlines and there is always this frenetic and reactive energy with them. I’m talking emails always marked as urgent, following up on an ask the day after they send the initial request, sending an email if I don’t immediately respond on teams (often with my boss cc’d), asking for estimates of what my projections will be before I send them over etc.

I hadn’t been in a role that worked with supply chain until 2020 and I know Covid was massively disruptive for supply chain. So I am left wondering - is this something that became the norm in a post-COVID environment or were they always like this? Also I don’t want to generalize an entire department/group of professionals (unless it’s marketing lol) - is it just supply chain at my company that is like this?

I’m curious to hear what your experience has been with supply chain.

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u/captain_vee — 16 days ago