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 [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 [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 [1 favorite]
Bookmarked because, well, duh, eventually.
posted by wenestvedt at 7:00 AM on November 15 [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 [2 favorites]