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Reading your post felt like I was reading my own experience. My mom just passed away a month ago from stage 4 stomach cancer after a brief, hard fight. > Havin

by Denzel 6y ago

Reading your post felt like I was reading my own experience. My mom just passed away a month ago from stage 4 stomach cancer after a brief, hard fight. > Having an advocate There aren’t enough upvotes in the world to highlight this! The average person never understands until they go through it. My dad, my brothers, and I were her advocates. At one point, laying the facts out to the doctors who were delaying some of her tests due to “insurance requirements” (false) and pleading with them that it felt like my mom was being forced to advocate for her own life at a time when she should be taken care of by the “experts”! We took shifts, around the clock, getting visitation exceptions to at least have 1 person sitting in the room with her at all times. Because the doctors had the amazing ability to burst into a room and present options to a half-cognizant woman suffering from cancer and expect her to make a decision there-and-then. > I can’t imagine what would have happened if me and my siblings weren’t able to help her. The exact thought I had as I walked out of the cancer ward past all the other rooms filled with people, laying there, alone. No one to advocate for them. There’s just a dizzying amount of information, decisions, staying on top of doctors, following up, describing symptoms such that nurses / doctors actually check to rule out new causes (e.g. describing stomach pain and lack of bowel movements over multiple days before they finally checked her stomach and found a blockage due to a new tumor in her intestine)... it’s hard to imagine how anyone could get along alone in a hospital with a complex case. Overall, the hospital experience left a bad taste in my mouth. I was happy that my mom knew she was loved by all of us though, and I got be bedside and talk with her for her last couple weeks. I never thought I’d lose my mom this early, but I’m glad there wasn’t anything left unresolved between us. She knew I was proud of her; she knew she was the best mom a son could ever ask for in my eyes. I loved her.

a_c 6y ago
I first encounter this subject through Being Mortal https://www.goodreads.com/book/show/20696006-being-mortal https://www.goodreads.com/book/show/20696006-being-mortal It was the most important perspective I gained
typhonic 6y ago
>> Having an advocate >There aren’t enough upvotes in the world to highlight this! My experience exactly, and repeatedly. I am old enough now to have spent many hours in the hospital next to family members. I don't say this to increase anyone's anxiety about hospital stays, but the care is better when close allies are there throughout stay.
codpiece 6y ago
Your post rang true. I just lost my mom last week and the hospital experience was a very similar situation. The doctor was particularly upset because I was a healthcare proxy (that was the first thing he asked when bursting into the room) and complained that he just talked to my brother who was also a healthcare proxy. It took a good several minutes until I explained that I was only there to visit my mom. You know, that human thing? Why I dressed nice and brought flowers? He complained some more and then pivoted down the hall, trailing two silent, masked students in his wake.
sizzle 6y ago
“We took shifts, around the clock, getting visitation exceptions to at least have 1 person sitting in the room with her at all times. Because the doctors had the amazing ability to burst into a room and present options to a half-cognizant woman suffering from cancer and expect her to make a decision there-and-then.” I Also lived through this doing night shifts every night for months switching with family members who all are in the medical or medically adjacent fields, having the fire hose of information shot in our direction for medical decisions that had to be made 24/7 For my intubated father in a medically induced coma for cerebral hemmoragic stroke. The amount of Medical staff that visited at all hours of the day and night to take blood samples, do breathing treatments for intubation, soiled gown changing at their convenience (they would simply let your loved one sit in their soiled gown at odd hours of the day which leads to UTI and life threatening Septic shock had I not been their to sound the alarm). All this plus medical errors at nursing shift change are very real concerns and happened shockingly often to us with wrong doses, late doses, miscommunications, etc. it is truly dizzinging and terrifying to say the least and my heart goes out to COVID patients who had family blocked from being bedside to advocate for their care prior to vaccine development. Life is truly short, having stared the death of loved ones in the face you know your time will come to be in that same hospital bed. Make your time on this planet count. Forget the adtech and user manipulation/deception/surveillance gigs and use your software dev superpowers for doing good things to look back on from your hospital bed. That’s how my perspective has changed to live my life moving forward helping others with my tech skill set is truly humbling.

by Denzel 6y ago

a_c 6y ago

I first encounter this subject through Being Mortal https://www.goodreads.com/book/show/20696006-being-mortal https://www.goodreads.com/book/show/20696006-being-mortal It was the most important perspective I gained

typhonic 6y ago

>> Having an advocate >There aren’t enough upvotes in the world to highlight this! My experience exactly, and repeatedly. I am old enough now to have spent many hours in the hospital next to family members. I don't say this to increase anyone's anxiety about hospital stays, but the care is better when close allies are there throughout stay.

codpiece 6y ago

Your post rang true. I just lost my mom last week and the hospital experience was a very similar situation. The doctor was particularly upset because I was a healthcare proxy (that was the first thing he asked when bursting into the room) and complained that he just talked to my brother who was also a healthcare proxy. It took a good several minutes until I explained that I was only there to visit my mom. You know, that human thing? Why I dressed nice and brought flowers? He complained some more and then pivoted down the hall, trailing two silent, masked students in his wake.

sizzle 6y ago

“We took shifts, around the clock, getting visitation exceptions to at least have 1 person sitting in the room with her at all times. Because the doctors had the amazing ability to burst into a room and present options to a half-cognizant woman suffering from cancer and expect her to make a decision there-and-then.” I Also lived through this doing night shifts every night for months switching with family members who all are in the medical or medically adjacent fields, having the fire hose of information shot in our direction for medical decisions that had to be made 24/7 For my intubated father in a medically induced coma for cerebral hemmoragic stroke. The amount of Medical staff that visited at all hours of the day and night to take blood samples, do breathing treatments for intubation, soiled gown changing at their convenience (they would simply let your loved one sit in their soiled gown at odd hours of the day which leads to UTI and life threatening Septic shock had I not been their to sound the alarm). All this plus medical errors at nursing shift change are very real concerns and happened shockingly often to us with wrong doses, late doses, miscommunications, etc. it is truly dizzinging and terrifying to say the least and my heart goes out to COVID patients who had family blocked from being bedside to advocate for their care prior to vaccine development. Life is truly short, having stared the death of loved ones in the face you know your time will come to be in that same hospital bed. Make your time on this planet count. Forget the adtech and user manipulation/deception/surveillance gigs and use your software dev superpowers for doing good things to look back on from your hospital bed. That’s how my perspective has changed to live my life moving forward helping others with my tech skill set is truly humbling.