I’m a bit of an early bird and that Sunday was kind of busy for me, I had spent the day announcing a cyclocross race in Delaware Park and jumped in one of the races myself, so by later in the evening I had one eye on the pillow. At this point in life, a phone call late in the evening isn’t going to be good news, and this one wasn’t. Months later, I made a FOIL request to the Amherst police department and secured body camera video to complete the story of that evening. Watching the video, I could see my sister, unsteady on her feet and somewhat unresponsive as the officer asked her questions and tried to quiz the neighbor who called me earlier in the evening. The officer wanted to know her name and what was wrong with her. He kept asking the neighbor what he thought was wrong. The neighbor became increasingly irate and told the officer she was having a medical emergency and how was he supposed to know what was wrong with her. Which was a valid question. At that moment, I saw her on the video presenting as she generally did in life, a tie dyed shirt and pants with a big floppy hat. She looks like someone you might not take seriously, an oddball. The officer apparently agreed with this thesis and was slow walking the ambulance call, trying to apply his non-knowledge of medicine to the situation. When the paramedics finally arrived, the officer told them to “take her to ECMC” in this dismissive way that still sticks in my mind. Implicit in his instruction was the fact that ECMC has the largest Psychiatric emergency center in the area and his non-knowledge indicated she was having a mental health issue. It was disquieting to watch the video much later with the realization that her brain was bleeding at that moment and a large part of the left rear area of her brain was dying due to lack of blood. While the officer dithered on the front steps. Because someone was dressed like a goofball. In a free country.
Oct 2020 my mom was having some off neurological symptoms, just odd things like not being able to use a computer keyboard, or find files, and some dizziness etc. My brother (ER doc) said she should get checked out, so on Oct 30 she went to Buff Gen via ambulance. I went down there, but due to covid and being in a busy city hospital on the Friday of Halloween weekend it was a number of hours before I could see her. She was in a bed in the landing/triage area, doing the crossword, she had not been moved to a room as she was not in immediate danger. The doc and PA were going over what they had found, which was nothing stroke related, she was communicating clearly, and seemed ok, but something was still off. I asked how her crossword was going and she showed me...she had the right words, but her handwriting was barely legible. I expressed to the doc that she had impeccable writing, and this was really odd; he concurred and sent her for a brain MRI. That revealed cancer, and lots of it. Over the next few weeks her symptoms progressed rapidly, but while I was staying with her (I am a lousy caregiver...) we would do the crossword every night. The answers were still in her brain, but it was taking longer and longer to get them out, and her frustration and resignation were both palpable.
I also think about immigrants to this country who can't read nor speak the language. Having dealt with a bit of our "systems" while helping our ukranian house guest navigate them, it must be terrifying to have health or financial issues without being able to communicate. Some people are wonderful, but some, you wonder why they are in the social services when they have obvious anger toward those who can't communicate.
My son in in biomedical engineering so he is adjacent to medical students in some of his life science courses. We were just talking about it the other night and he said the other engineering students they all help each other out and work together to get answers and succeed, but the medical students they won’t help at all and will provide wrong information to make others fail. We end up with this highly competitive situation in medical education that puts some oddly formed people in the role of front line caregivers. I’m not sure how we fix that. I also encountered people like speech and occupational therapist who were beyond amazing and their level of compassion and empathy. I’m sorry for the pain you had to go through with your mom. I’m sure she was thankful to have you there
Communication can be so difficult. My Mother in Law had a subdural aneurysm; brain bleed ~11 years back. She totally lost her speech with the exception of a desperate attempt at minor lip muttering and resultant back-up hand signaling. A cerebral brain shunt was put in and regulated often for drainage. This was very traumatic to family and friends and long term care facility (name not mentioned) was mediocre at best for any rehabilitative care, especially for falls out of wheelchair. We all did our best to read and communicate to her & read and understand her scribbly note replies. In hindsight, we all should have pushed to elevate her to a more specific brain injury rehabilitative facility? She passed within 6 months, but did express joy on many 'signaling' sign language visits.
So sorry to hear about the loss of you sister. Sorry as well that the behavior of so many others leaves you feeling as bleak as this sounds. I often feel similarly as I see people not so much "be lousy" but avoid being decent. Avoid inconveniencing themselves to help someone else, avoid seeing how their support for a politician who spouts lies is ok because they are "strong on the economy" and, as you said, people who tell the thinest of lies to themselves that their selfish, greedy, mean spirited behavior is somehow justified because the people on the other end of the stick "deserve it." With that vent out of the way I think the most productive thing any of us can do is, as you said, "....put another brick in the wall and try to leave the place cleaner than when we got here."
Wonderful piece John. Went through so much of this, as well as Tom's comment below, over the last few years with my mom. The hospital stays were my journey - my sister was her immediate care giver as my mom lived with her the last 5 years. So sorry for your sister's passing, but very glad for you, and her, that your family could step in and be her caregivers. You know it meant the world to her, and she truly felt loved. That's so important.
Oct 2020 my mom was having some off neurological symptoms, just odd things like not being able to use a computer keyboard, or find files, and some dizziness etc. My brother (ER doc) said she should get checked out, so on Oct 30 she went to Buff Gen via ambulance. I went down there, but due to covid and being in a busy city hospital on the Friday of Halloween weekend it was a number of hours before I could see her. She was in a bed in the landing/triage area, doing the crossword, she had not been moved to a room as she was not in immediate danger. The doc and PA were going over what they had found, which was nothing stroke related, she was communicating clearly, and seemed ok, but something was still off. I asked how her crossword was going and she showed me...she had the right words, but her handwriting was barely legible. I expressed to the doc that she had impeccable writing, and this was really odd; he concurred and sent her for a brain MRI. That revealed cancer, and lots of it. Over the next few weeks her symptoms progressed rapidly, but while I was staying with her (I am a lousy caregiver...) we would do the crossword every night. The answers were still in her brain, but it was taking longer and longer to get them out, and her frustration and resignation were both palpable.
I also think about immigrants to this country who can't read nor speak the language. Having dealt with a bit of our "systems" while helping our ukranian house guest navigate them, it must be terrifying to have health or financial issues without being able to communicate. Some people are wonderful, but some, you wonder why they are in the social services when they have obvious anger toward those who can't communicate.
My son in in biomedical engineering so he is adjacent to medical students in some of his life science courses. We were just talking about it the other night and he said the other engineering students they all help each other out and work together to get answers and succeed, but the medical students they won’t help at all and will provide wrong information to make others fail. We end up with this highly competitive situation in medical education that puts some oddly formed people in the role of front line caregivers. I’m not sure how we fix that. I also encountered people like speech and occupational therapist who were beyond amazing and their level of compassion and empathy. I’m sorry for the pain you had to go through with your mom. I’m sure she was thankful to have you there
Communication can be so difficult. My Mother in Law had a subdural aneurysm; brain bleed ~11 years back. She totally lost her speech with the exception of a desperate attempt at minor lip muttering and resultant back-up hand signaling. A cerebral brain shunt was put in and regulated often for drainage. This was very traumatic to family and friends and long term care facility (name not mentioned) was mediocre at best for any rehabilitative care, especially for falls out of wheelchair. We all did our best to read and communicate to her & read and understand her scribbly note replies. In hindsight, we all should have pushed to elevate her to a more specific brain injury rehabilitative facility? She passed within 6 months, but did express joy on many 'signaling' sign language visits.
So sorry to hear about the loss of you sister. Sorry as well that the behavior of so many others leaves you feeling as bleak as this sounds. I often feel similarly as I see people not so much "be lousy" but avoid being decent. Avoid inconveniencing themselves to help someone else, avoid seeing how their support for a politician who spouts lies is ok because they are "strong on the economy" and, as you said, people who tell the thinest of lies to themselves that their selfish, greedy, mean spirited behavior is somehow justified because the people on the other end of the stick "deserve it." With that vent out of the way I think the most productive thing any of us can do is, as you said, "....put another brick in the wall and try to leave the place cleaner than when we got here."
Wonderful piece John. Went through so much of this, as well as Tom's comment below, over the last few years with my mom. The hospital stays were my journey - my sister was her immediate care giver as my mom lived with her the last 5 years. So sorry for your sister's passing, but very glad for you, and her, that your family could step in and be her caregivers. You know it meant the world to her, and she truly felt loved. That's so important.