Aw Bess, I hear you. I'm SOOO with you on everything you've shared here. I'm bobblehead nodding so much from the UK perspective, too. There are protections for the vulnerable, but these are also huge barriers. Countless times, on forums or in person, I've commiserated with other carers about what they go through in a crisis, and eventually, when they emerge from the darkness, some sort of workaround's been established...You'd think that 'the system' would re-calibrate and evolve, but no - the rote sequential questions within 'the system' and other 'institutions' continue - E.g. utilities, banks, etc . This means 'new' caregivers & loved ones relive these same issues, like a bad 'Groundhogs day' film, over and over. Don't get me started about Dad's probate when Mum was going through her chemo!
Few lines in, I started wondering “how the hell would someone survive this alone?” And what if they do not have parents, a partner or a child to consent for them but only friends? Never thought about institutionalised consent and the consequences for a lonely generation before.
Thanks for sharing your story. Multiplied by all the people - elders, children, immigrants, impoverished people - who have similar stories or worse, if that’s even possible, increases my motivation to change something about our health care system. I wish you both recovery and the best life now.
Ugh. So if we ever have our tongues surgically removed, we should pre-record our consent for an intractable system, the way we bank eggs and sperm pre-op.
I'm sorry for you two and all others enduring this. Thank you for literally giving voice.
This brilliant column brought me right back to the middle of the Dadaist comedy that was my life as a caregiver for my mother and as the executor of her estate. Despite having provided two hospitals and seven medical practices (plus banks, investment companies, credit card companies,…) with a signed PDF of my power of attorney to speak for her, all of them wanted her to sign an additional document or get her verbal consent. We also got a lot of dial tones when she would giggle, scream, lecture or accuse the caller of stealing her jewelry in her paranoid delusions. I’m grateful she had created the power of attorney documents while she was still competent. Because in one late night Friday fall, my brilliant and independent 93-year-old mother turned into a two-year-old toddler with paranoid delusions and involuntary movement disorder. She went from an erudite and articulate public speaker who still drove at 93 to someone needing round-the-clock care. Eventually the worst symptoms subsided but the impulsive toddler remained. And so did the challenges to my representation for her.
Regarding the “we need verbal consent” - what the fck!!! That kind of thing drives people to insanity even without the inability to respond. I can only imagine what string of obscenities my wife would unleash in a similar situation, as she already lets loose on the dehumanizing flowchart communications with massive corporations on the phone. Your writing here is so illuminating.
I wonder if you could add a close male friend/family member on to the call (3 way call) to give consent in a male voice? Not a fair solution and does not address the underlying problem for others, but…
There is no way to do this alone, and it is horrifying to consider all those who die because they don’t have advocates.
Bess, you are a brilliant writer! As a fellow ER doc, your writings bring me to reconsider how speedily we dispense with human considerations in the "Meet 'em, greet 'em, treat 'em and street 'em" conveyor belt which passes for health care here. Thank you.
What you can do is use google translate: google " google translate" _ select english to english or whatever language.https://translate.google.com/
1- you type out the message/text
2- look for the tiny speaker icon at the bottom of the typing box
3-put the phone next to your computer speaker...
4- click on the speaker icone and the computer-voice speaks outloud what you wrote
.... It's better than whistling etc and confusing the callers. Hope it gets better.
Aw Bess, I hear you. I'm SOOO with you on everything you've shared here. I'm bobblehead nodding so much from the UK perspective, too. There are protections for the vulnerable, but these are also huge barriers. Countless times, on forums or in person, I've commiserated with other carers about what they go through in a crisis, and eventually, when they emerge from the darkness, some sort of workaround's been established...You'd think that 'the system' would re-calibrate and evolve, but no - the rote sequential questions within 'the system' and other 'institutions' continue - E.g. utilities, banks, etc . This means 'new' caregivers & loved ones relive these same issues, like a bad 'Groundhogs day' film, over and over. Don't get me started about Dad's probate when Mum was going through her chemo!
This is dark comedy. Moloch indeed.
Few lines in, I started wondering “how the hell would someone survive this alone?” And what if they do not have parents, a partner or a child to consent for them but only friends? Never thought about institutionalised consent and the consequences for a lonely generation before.
You are such a talented writer. Thank you for sharing this.
Thanks for sharing your story. Multiplied by all the people - elders, children, immigrants, impoverished people - who have similar stories or worse, if that’s even possible, increases my motivation to change something about our health care system. I wish you both recovery and the best life now.
Ugh. So if we ever have our tongues surgically removed, we should pre-record our consent for an intractable system, the way we bank eggs and sperm pre-op.
I'm sorry for you two and all others enduring this. Thank you for literally giving voice.
This brilliant column brought me right back to the middle of the Dadaist comedy that was my life as a caregiver for my mother and as the executor of her estate. Despite having provided two hospitals and seven medical practices (plus banks, investment companies, credit card companies,…) with a signed PDF of my power of attorney to speak for her, all of them wanted her to sign an additional document or get her verbal consent. We also got a lot of dial tones when she would giggle, scream, lecture or accuse the caller of stealing her jewelry in her paranoid delusions. I’m grateful she had created the power of attorney documents while she was still competent. Because in one late night Friday fall, my brilliant and independent 93-year-old mother turned into a two-year-old toddler with paranoid delusions and involuntary movement disorder. She went from an erudite and articulate public speaker who still drove at 93 to someone needing round-the-clock care. Eventually the worst symptoms subsided but the impulsive toddler remained. And so did the challenges to my representation for her.
Regarding the “we need verbal consent” - what the fck!!! That kind of thing drives people to insanity even without the inability to respond. I can only imagine what string of obscenities my wife would unleash in a similar situation, as she already lets loose on the dehumanizing flowchart communications with massive corporations on the phone. Your writing here is so illuminating.
I wonder if you could add a close male friend/family member on to the call (3 way call) to give consent in a male voice? Not a fair solution and does not address the underlying problem for others, but…
There is no way to do this alone, and it is horrifying to consider all those who die because they don’t have advocates.
Bess, you are a brilliant writer! As a fellow ER doc, your writings bring me to reconsider how speedily we dispense with human considerations in the "Meet 'em, greet 'em, treat 'em and street 'em" conveyor belt which passes for health care here. Thank you.