Eldercare, Family Caretaking, and End-of-life Logistics: Stuff I Learned
November 9, 2023 9:20 AM Subscribe
Eldercare, Family Caretaking, and End-of-life Logistics: Stuff I Learned
My mother died this year, after a long decline in her health, and I was one of the main people who helped take care of her. While caring for her, preparing for her death, and handling logistics afterwards, I learned a lot from online resources (including MetaFilter), various professionals, and friends. So I'm trying to pass on some things I learned -- about paperwork, patient advocacy, body donation, delegating to friends, coping with Mom's delirium and incontinence, and more -- by sharing them in a blog post I have been working on for months. It was pretty hard to write in places, and I hope it saves people a few unpleasant surprises.
Shout-outs in my post to Eyelash, ColdChef, and everyone in the "What's the easiest way to listen to classical music all the time?" Ask and the "DeathSucks.pdf (also known as SayingGoodbye.pdf)" front page thread.
Topics I cover:
💔 You HAVE to take care of yourself: what happens if you don’t, the minimum you have to do, and checking for emergency levels of stress.
🗓 Changes to expect in the months, weeks, and days before death: read this free guide.
☑️ Checklists for before and just after death: a few free lists and workbooks to help you plan things and take care of logistics.
📝 Wills, powers of attorney, and advance health care directives: start before you need them, and LegalZoom is fine.
🥔 Easy-to-eat food, and letting your friends help you: MealTrain, deliveries, and what food is easiest.
🛐 Hospital chaplains can do a lot: even if you’re not Christian, they can connect you to useful people and resources.
🎯 Patient advocacy (which means catching mistakes): the medical team will probably accidentally miss stuff unless you remind them.
📒 Medical notetaking at appointments and the bedside: be a patient advocate, provide continuity of care, and prevent mistakes; make and bring basic records, and keep up during a hospital stay.
🧪 Researching specific treatments and how to perform at-home procedures: look up science and instructions by professionals so you can know what’s happening and how to troubleshoot.
🫀Organ and body donation, and donating unused medicine: try to do paperwork before death, and have a Plan B.
🏥 Palliative care, hospice, insurance (including Medicare), and hospice facility eligibility: the doctors are giving you subtext you need to understand.
😱 Delirium & persuasion: it’s hard to be with someone who’s losing connection with reality, but I have some tips.
🎶 Music for comfort: calming playlists can calm agitation, and be solace if you’re not there.
📚 Books and blogs that helped me prepare for this: I recommend some memoirs and how-tos.
My mother died this year, after a long decline in her health, and I was one of the main people who helped take care of her. While caring for her, preparing for her death, and handling logistics afterwards, I learned a lot from online resources (including MetaFilter), various professionals, and friends. So I'm trying to pass on some things I learned -- about paperwork, patient advocacy, body donation, delegating to friends, coping with Mom's delirium and incontinence, and more -- by sharing them in a blog post I have been working on for months. It was pretty hard to write in places, and I hope it saves people a few unpleasant surprises.
Shout-outs in my post to Eyelash, ColdChef, and everyone in the "What's the easiest way to listen to classical music all the time?" Ask and the "DeathSucks.pdf (also known as SayingGoodbye.pdf)" front page thread.
Topics I cover:
💔 You HAVE to take care of yourself: what happens if you don’t, the minimum you have to do, and checking for emergency levels of stress.
🗓 Changes to expect in the months, weeks, and days before death: read this free guide.
☑️ Checklists for before and just after death: a few free lists and workbooks to help you plan things and take care of logistics.
📝 Wills, powers of attorney, and advance health care directives: start before you need them, and LegalZoom is fine.
🥔 Easy-to-eat food, and letting your friends help you: MealTrain, deliveries, and what food is easiest.
🛐 Hospital chaplains can do a lot: even if you’re not Christian, they can connect you to useful people and resources.
🎯 Patient advocacy (which means catching mistakes): the medical team will probably accidentally miss stuff unless you remind them.
📒 Medical notetaking at appointments and the bedside: be a patient advocate, provide continuity of care, and prevent mistakes; make and bring basic records, and keep up during a hospital stay.
🧪 Researching specific treatments and how to perform at-home procedures: look up science and instructions by professionals so you can know what’s happening and how to troubleshoot.
🫀Organ and body donation, and donating unused medicine: try to do paperwork before death, and have a Plan B.
🏥 Palliative care, hospice, insurance (including Medicare), and hospice facility eligibility: the doctors are giving you subtext you need to understand.
😱 Delirium & persuasion: it’s hard to be with someone who’s losing connection with reality, but I have some tips.
🎶 Music for comfort: calming playlists can calm agitation, and be solace if you’re not there.
📚 Books and blogs that helped me prepare for this: I recommend some memoirs and how-tos.
Role: creator, writer
Thank you for this, it is very relevant to my life right now.
I am so sorry for your loss, it is wonderful of you to share what you learned during such hard times ❤
posted by Jenny'sCricket at 5:04 PM on November 10, 2023 [1 favorite]
I am so sorry for your loss, it is wonderful of you to share what you learned during such hard times ❤
posted by Jenny'sCricket at 5:04 PM on November 10, 2023 [1 favorite]
It's good of you to share this. That your grief can make a slightly-easier path for some else to follow is a gift.
Bookmarked because, well, duh, eventually.
posted by wenestvedt at 7:00 AM on November 15, 2023 [1 favorite]
Bookmarked because, well, duh, eventually.
posted by wenestvedt at 7:00 AM on November 15, 2023 [1 favorite]
How do I save this so I can find it later?...maybe I can print it out...checking ink levels in printer...
posted by Czjewel at 2:57 AM on December 20, 2023
posted by Czjewel at 2:57 AM on December 20, 2023
kristi made a front page post about this project. Glad you and others found it valuable.
posted by brainwane at 5:14 AM on January 24 [1 favorite]
posted by brainwane at 5:14 AM on January 24 [1 favorite]
another concern is ensuring that caregivers respect the faith/atheism of clients and their loved ones: my father's religious bigot caregiver tried to lovebomb me into converting right after she had witnessed me praying with my parents' rabbi. Because of this, my biological excuse for a mother refused to let me be with him during the last hours of his life.
This woman tried to claim that telling me "you must accept Jesus into your heart"--which I understand is the main tenet of Christianity--wasn't disrespecting my faith.She had been hired through Jewish family services in LA and previously worked for hasids and orthodox: had dealt with separate kitchens, been the one to handle electricity on shabbat. I highly doubt that she tried to be "well meaning" with them.
I reported E to the caregiver agency but they told me that because my mother was the one to hire her chupahija had the final say as to what happened to her....so I suppose she received a warning, ignored it and continued to emotionally abuse the vulnerable.
I am still enraged about this.
posted by brujita at 8:27 AM on January 25
This woman tried to claim that telling me "you must accept Jesus into your heart"--which I understand is the main tenet of Christianity--wasn't disrespecting my faith.She had been hired through Jewish family services in LA and previously worked for hasids and orthodox: had dealt with separate kitchens, been the one to handle electricity on shabbat. I highly doubt that she tried to be "well meaning" with them.
I reported E to the caregiver agency but they told me that because my mother was the one to hire her chupahija had the final say as to what happened to her....so I suppose she received a warning, ignored it and continued to emotionally abuse the vulnerable.
I am still enraged about this.
posted by brujita at 8:27 AM on January 25
This is an amazing resource brainwane. I'm so sorry for the loss of your mom. You clearly put a lot into taking care of her, she was lucky to have you there <3
posted by Eyelash at 7:16 PM on January 25 [1 favorite]
posted by Eyelash at 7:16 PM on January 25 [1 favorite]
Thank you brainwane, so sorry for your loss.
When you originally posted this, I was in the middle of these very things with my dad, who had a massive stroke in October 2023.
What a beautiful gift to offer everybody, thank you. I'm deep in grief right now, so just ...thank you
posted by honey badger at 10:49 PM on February 10 [1 favorite]
When you originally posted this, I was in the middle of these very things with my dad, who had a massive stroke in October 2023.
What a beautiful gift to offer everybody, thank you. I'm deep in grief right now, so just ...thank you
posted by honey badger at 10:49 PM on February 10 [1 favorite]
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This is an extraordinary resource, and I have two friends I plan to forward it to right away.
It is a wonderful, generous thing you have done here, sharing all you learned with other people who will find it so helpful.
I am truly grateful for the work and care you put into this, and on behalf of my two friends especially, thank you.
posted by kristi at 10:50 AM on November 9, 2023 [2 favorites]