Blog by Sumana Harihareswara, Changeset founder
Eldercare, Family Caretaking, and End-of-life Logistics: Stuff I Learned
My mother died recently, after a long decline in her health, and I was one of the main people who helped take care of her. (Here’s her obituary.) While caring for her, preparing for her death, and handling logistics afterwards, I learned a lot from online resources, various professionals, and friends. So I'm trying to pass on some things I learned by sharing them in this blog post.
What I’ll cover (the stuff you NEED to read SOON is first):
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 and 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.
Explicit discussion of death
In this post I'll talk explicitly about poor health, death, and related subjects, such as incontinence and delirium; take care if these subjects will disturb you.
Disclaimers: I'm most experienced with death and healthcare in the US, and have tried to note that throughout this piece so you can more easily ignore things irrelevant to your area. And: My sister was my mom's primary caretaker, and likely would have different advice!
This is an inherently stressful situation. [footnote 1] If you are not intentional about making sure you get multiple real meals per day and multiple solid hours of sleep each day, and shower at least a few times per week, probably no one else will make sure of those things, so you will be in bad shape to do this work. And then a bunch of bad things are more likely to happen:
Even if you self-care as much as you can, you will make mistakes; a friend suggested that, in about the month after a parent’s death, just acknowledge that you’ll make some foolish errors that you wouldn’t otherwise make. I sure did. Try to make room for this by telling other people in your life that you need to withdraw from most obligations for a couple months. This is a situation they’ll probably want to help you with.
If you can ask for help, do. This is a situation where you can ask your close friends and family to physically visit and help with caretaking for a week or a month; this will help a lot. For ideas for help from folks who can’t come in person, see “Easy-to-eat food, and letting your friends help you.”
My friend Jed mentioned to me, just after my dad died in 2010: “if you can avoid it, don't make any big financial decisions in the first six months or so after the death of someone close to you. Grief can make it hard to make good decisions, and there may be pressure from various directions to make such decisions before you're ready to.” I’d expand this to: any big decisions, like getting a prominent tattoo, or moving to another city, or breaking up with your partner, or shutting down a volunteer group you run. It's like this saying I read: “don’t cut down a tree in winter.” I didn’t entirely follow this advice, but the big changes I made were ones I’d been thinking about for years.
This diagram of the “stress continuum” (from a COVID support group) helps me distinguish among “kinda bleh” and “having a lot of trouble, need some assistance from friends” and “emergency, need to fix some part of this NOW.” Here’s more on stress first aid.
Try to have 20 minutes every day to let your mind rest on something completely separate from the caregiving. The respite helps you come back a little fresher.
As Leonard's mom Frances was dying in 2006, the hospice-at-home folks gave us a booklet that guided us through what to expect in the last few months, weeks, and days of someone's death. It explained likely changes in the patient's eating, breathing, confusion, mood, etc. I think it was Gone From My Sight: The Dying Experience by Barbara Karnes.
Tip: Early this year, I saw that MetaFilter user Eyelash linked to a similar book that was free to read online: When the Time Comes: A Caregiver's Guide, by Hospice of Santa Cruz County. [EDITED 9 November: fixed link. Alternative: "Signs of Approaching Death" and "A Caregiver's Guide to the Dying Process" from Hospice Foundation of America.] I read it and shared it with family, and it was very helpful in understanding what we were seeing, and preparing us for what would come next. For instance, the onset of social withdrawal, increased sleep, and decreased eating and drinking are likely a sign that death is 1-3 months away. I recommend you read this, especially pages 15 and 16, even if the patient isn’t imminently dying, so you can better recognize that and prepare.
In the hospital I asked the chaplain whether they had some paper copies of a similar pamphlet, and they gave us a few. Having those on hand to share with Mom's visitors helped them understand that what they were seeing was normal and not a cause for alarm. It was particularly helpful for people who have never been bedside with a dying person before.
(Chronologically, maybe this should go later in this post, but these resources are so useful and people often need them urgently, so I’m putting this near the start.)
A few years ago, Tumblr user ms-demeanor published a free "workbook on the kind of bullshit you need to do when someone you love dies", available in two different versions as PDFs on Google Drive. One is DeathSucks.pdf, a "version with lots of swearing at the useless, shitty situation you're in"; the other is SayingGoodbye.pdf, a "version with a fair amount of black humor but no cursewords" (except she missed one f-bomb). Topics include "Prepare to spend a long and miserable time on the phone," "Depressing Mad Libs" (obituary templates), "So You Suddenly Have To Become Some Kind of Hacker" about getting into online accounts, and "How to plan a non-religious death party". It is USA-specific in some parts.
I found the workbook very helpful as my family started preparing for Mom's death and gathering information we would need for the paperwork. And I used her template when writing the initial draft of our social media announcement and the obituary. (Warning: in the US, to publish an obituary in traditional newspapers, you generally have to go through Legacy.com and their form will demand the decedent’s birth date for the obit, which makes you more vulnerable to identity fraud scams. That’s the main reason we decided not to publish an obituary in US newspapers.)
The book was also a great jumping-off point, partly through the advice people shared in the MetaFilter thread about the guide, and also because ms-demeanor listed and endorsed a few other websites so I didn't have to search the particularly scammy, spammy part of the web where vultures prey on grieving families. Among them:
And I ran across this Legacy.com overview about settling an estate and it's helped us think of things to look into.
Since then, “My Parents Are Dead; What Now?” has launched. It has several checklists for the different stages of coping with an elder’s death (before, just after, and so on). “What Now” also recommends several resources.
And: if the death occurred in the US and was attributed to COVID-19, you’re eligible for up to $9,000 to help cover funeral expenses, from a government program.
All of these are somewhat US-specific.
In the last few months or years of someone’s life, or as health conditions affect them more markedly, they can become less and less able to do paperwork. Their handwriting can get shakier, and it can exhaust them to sit up enough to write. They often need to ask other family members to fill out forms, read documents aloud to them and lead any discussion, and help them sit up to sign paperwork.
So it's a really good thing that my mother had already made and finalized a last will and testament, years before her health went into serious decline, and my sister and I had copies and already knew what it said. Questions like "where is the will?" and "what should go to who?" are not a burden we have to deal with now, and we're grateful for that. (International wrinkle: If someone's dying in a different country than where they originally made their will, or they have property in more than one country, talk with an estate lawyer about that.)
And it's a good thing that we arranged for a few of us to have Power of Attorney for her, as well as Healthcare Power of Attorney. Those two are distinct! In North Carolina, like in many places in the US, regular PoA is good for delegating decision-making power for every kind of decision EXCEPT stuff about healthcare -- that has to be a separate bit of paperwork.
If you are taking care of someone with a serious illness, and -- facing facts -- it's likely that at some point they'll get incapacitated to the point where someone else might need to make medical decisions for them, then talk with them about what lifesaving measures they want and don't want. And get their wishes down in writing. There are different names for different documents involved here ("do not resuscitate," "living will," "advance health directive", etc.), and those names, along with what the patient is even permitted to reject, differ by country and state. As Atul Gawande writes, this discussion is:
the conversation that we all need to have when the chemotherapy stops working, when we start needing oxygen at home, when we face high-risk surgery, when the liver failure keeps progressing, when we become unable to dress ourselves. I’ve heard Swedish doctors call it a “breakpoint discussion,” a systematic series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value—being with family or travelling or enjoying chocolate ice cream. Few people have this discussion, and there is good reason for anyone to dread these conversations. They can unleash difficult emotions. People can become angry or overwhelmed. Handled poorly, the conversations can cost a person’s trust. Handled well, they can take real time.
You have to have that hard conversation when it doesn’t feel urgent – while your loved one is coherent and death doesn’t feel imminent – because you just never know when a cascade of bad luck will make you wish you had those decisions sorted out. If the patient doesn’t have an advance health directive document of some kind, in at least the US the standard of care is that the doctors have to do everything they can to save the person’s life, even if that causes them a lot of pain and even if it’s very unlikely they’ll ever regain consciousness.
Tip: In the US, a person's Power of Attorney delegation dies with them. So after they die, just because you were named in their Power of Attorney document doesn't mean you can continue making decisions on behalf of their estate. This is where official roles like "executor of the will, as named in the will" and "personal representative of the estate, as documented by a court" come in.
In the US you can use the online service LegalZoom to do an Estate Planning Bundle for $249 for one person, or for 2 people for $349 total. It includes a last will & testament, [non-healthcare] power of attorney, and healthcare advance directive. You choose the plan, pay, and then fill out some questionnaires, and then some hours later you get PDFs to print out, and instructions on what to do next (get them notarized, signed, and witnessed). After you sign up, you have 30 days to change your answers to the questionnaires and re-generate fresh PDFs. So you can go through each of the 3 questionnaires once to get a sense of the questions, then take some time to think about your answers. The bundle also comes with at least 1 free 30-minute consultation with an attorney so you can get some advice before your answers are locked in.
For some more money they’ll set you up with a “living trust,” which is more complicated than a simple will, but can make the process smoother after the death.
And we didn’t do this, but if the patient is receiving Social Security benefits, help them set you up as an advance designated representative payee, so that if/when they’re incapacitated, you can receive their Social Security payments and spend them on their behalf.
Heads-up: Unfortunately, in the US, Powers of Attorney and advance directives are state-specific — a hospital in Oregon won’t accept an advance directive written and executed in Virginia. This means that if the dying person is (or expects to be) receiving care in multiple states, you will likely need multiple sets of documents — one for each state. (Argh.)
My spouse Leonard asked me to add: make sure the dying person is joint, not sole, on all the bank accounts, cars, and mortgages. That is, things will be a lot easier if they are joint owner of the account and the property along with their intended heir, rather than just relying on the heir being the beneficiary. (If there’s a lot of property of this sort, you might want to set up a living trust.) And, of course, consult relevant legal or tax professionals about this for your situation, but if the dying person wants to transfer money from their bank account to their heirs’ before dying, that is an option they have as well.
I can't remember where I read this advice, but: if you or someone you care about is dealing with a caregiving crisis, get them nourishing food that they can eat with zero preparation, with their hands. For example, US supermarket delis often offer platters with cut-up vegetable sticks, cheese, and dips. This is also a situation where sending an Edible Arrangement as a gift makes sense: fruit on sticks (no utensils or plates to wash). One variation that’s not quite as good, in my opinion: food that responds well to chilling, freezing, and reheating, can be eaten with a spoon cold or at room temperature, and works fine at the snack OR the meal size. South Indians sometimes do uppitu, Utahns do funeral potatoes.
If you're a caregiver: your friends from near and afar want to help you. This is a use case for MealTrain, a site that makes it easy for your friends to set up meal deliveries for you, per your preferences and timing needs. A friend used this last year -- it was great because my household could sign up for a specific dinner slot and cook or order something that we knew they'd like. And/or, you can mention to your friends that they could give you virtual gift certificates for food delivery services like DoorDash (which I ordinarily avoid because of their awful labor practices).
In this inherently stressful situation, delegate what you can. Things you can delegate or ask for include:
In the US, it's common for hospitals and hospices to have chaplains. Chaplains offer spiritual care and other help to patients and their families and caregivers, ideally whether or not you share the chaplain's religion, and whether or not you're religious at all. The chaplain service is often on-call 24 hours a day, and they can offer:
I think a lot of people who read my site are not religious, and thus might assume that there's nothing chaplains could do for them. But many of them are just fine as counselors who can give you free stuff and a hug regardless.
Also, in a busy hospital, the chapel is usually a quiet place you can read, take a tiny nap, or just sit with your thoughts for a bit, often by yourself. No one checks whether you're Christian.
People with complex chronic illnesses need you to take notes, read medical stuff, and catch things that would otherwise fall through the cracks, because you cannot count on any doctor or other medical professional to do it.
You may have heard of the phrase “patient advocate.” When you accompany someone to a doctor’s office visit, or stay bedside when they’re in the hospital, you can be their patient advocate, and sometimes provide institutional memory beyond what’s in the medical information systems. There can be, and usually are, frequent changes in which specific doctors and nurses care for your patient (more about this in “keeping up during a hospital stay”). So you have the opportunity to vastly improve the quality of care they get.
Part of that is because simply having a witness in the room who isn’t the patient generally causes doctors and other medical providers to act better. They cut fewer corners.
Plus, you can just plain speak up and ask questions, sometimes better than the patient can. They’re probably exhausted, and emotionally processing the bad things happening in their bodies, and perhaps apt to minimize their symptoms, reticent about admitting how things have gotten worse. You can make notes with them ahead of time about questions they want to ask, and then help make sure the provider answers them.
Let’s take a moment to consider pain, as requested by Liz Henry: It’s often hard for patients to communicate well about their pain. Many patients habitually understate how much pain they’re in, or need to adapt their explanations of their chronic pain to customary “1-10” pain scales that don’t offer much nuance. Pain can also cause incoherence, agitation, confusion, and other issues that get in the way of them communicating at all. So you also have to keep aware of these patterns and ensure your loved one is getting pain relief, which means sometimes gently contradicting them in front of the doctor (example: “Actually, I think the pain gets worse than that at night, doesn’t it? [describe specific recent experience]”).
But another huge thing you can do is to pay attention, take notes, and develop and maintain a continuing understanding of your loved one’s health and treatments - and a relationship with the supporting medical team. And if you don’t do it, likely no one else will.
At least in the US, you usually can’t depend on your medical providers to thoroughly keep track of all of a patient’s conditions, medications, etc. and keep them in mind when treating the patient. Any one doctor, nurse practitioner, physical therapist, etc. sees a lot of patients, whether in or out of a hospital. Ideally, they’d thoroughly review the chart before a visit, and then accurately update it during or afterwards. It’s hard for them to do that – and the “one size fits all” templates in electronic health records often make it hard for them to delete incorrect or obsolete data, or highlight what’s most important.
And a person with serious illness often has something like eight or more providers (example: primary care provider, dentist, ophthalmologist, pharmacist, physical therapist, home health care aide, cardiologist, and neurologist). Ideally, they would all share information with each other and provide what’s called “continuity of care” so that nothing falls through the cracks, they don’t prescribe duplicative or contradictory medications, intermittent symptoms don’t get forgotten, and so on.
But it’s very likely they aren’t all affiliated with the same hospital or other organization, so they don’t share electronic medical records with each other. Even once a patient has been admitted to a hospital, that hospital’s medical records probably don’t reflect test results and notes from some specialist visits, because those specialists aren’t at that hospital.
So, you – the patient advocate – are continuity of care. You - one person, or a family-and-friends-team - are the person or group who absorbs all the comments and advice and photocopied handouts from medical providers, who reads the test results and compares them to each other, who regularly reviews symptoms and medications and ongoing treatments, and can thus notice all the patterns. You are the person or group who has an overall intuition for the brittle interconnected systems – cardiovascular, digestive, neurological, etc. – in a person with serious health problems. And so you are who is likely to notice errors.
I have, at least once, caught a catch-22 problem where Specialist A was waiting for Specialist B to confirm Status S before A could perform Procedure P on my mom, but Dr. B was waiting for Dr. A to do P before confirming S, and neither of them had realized they were at an impasse. And you can’t count on anyone else to notice that sort of thing. It’s a bad situation, but the faster you accept it the less you’ll run into bewildering and painful “why didn’t they catch that?!” problems.
Therefore: Sometimes you’ll need to ask probing questions or push back on behalf of your loved one. And this is a big reason my sister pointed out, when reviewing these notes, that another important component of patient advocacy is developing and maintaining good relationships with the care team. The mercenary way of talking about this is that you don’t want the doctors and nurses to get sick of you, so you need to be extra-nice to them to make up for sometimes being extra-pushy. The more humane way of understanding this is: give them a chance to get to know you as a loving, friendly, trustworthy person, so they’re better prepared to understand why you’re causing friction, and it’s emotionally easier for them to trust that you’ll appreciate if they bend a policy or otherwise go the extra mile for you. In India, I’m off-balance and don’t get the rhythms of this stuff right. In the US I do well by using fairly standard How To Win Friends And Influence People and Getting To Yes sorts of approaches: genuinely listening to them, explicitly appreciating them, explaining where I’m coming from when I have a concern, and so on. Sweet treats also help; see “Easy-to-eat food, and letting your friends help you” for more.
I’ve been pretty simplistic in this description of patient advocacy; it’s a complex skill. And I haven’t talked at all about what a patient advocate or “health advocate” can do to help someone navigate insurance, bills, and health care bureaucracy, and the fact that you can hire someone to do this. Nathan Matias recently published a blog post about that.
But a big part of all this is taking and referring to notes. Which leads to…
When I accompanied my mother for a particular emergency room visit, I later saw that the doctors’ notes included “Most history obtained via the daughter, who is at bedside, who is a very thorough historian.” and “Daughter at bedside. Has many questions and is very helpful with history.” OK, that’s a double-edged sword; the doctors are noting, for future staffers to see, that I had a lot of information, but also that I might take a lot of their time with my exposition and my questions.
But at least they knew that they’d be able to get answers to their questions. My mom was sometimes incoherent with pain, or didn’t remember details like how long it had been since a particular procedure. So my presence, records, and notes helped a lot.
Every time you go to a medical appointment or the hospital, here’s what you carry:
Here’s my experience from a few hospital stays in the US.
Usually, a physician with overall responsibility for the patient’s case (the “hospitalist”) comes by every 24 hours (a stop on their “rounds”) and examines and talks with them for maybe 5-10 minutes. You won’t be able to predict when they’ll show up. You might have different hospitalists every day for a few days, or the same hospitalist for multiple days in a row.
The on-shift nurse for your part of the hospital might change once or twice per day, and, again, you may see the same nurse 5 days in a row or have a lot more churn. They’re taking care of 3-6 patients during their shift. You might see the nurse come by a few times per shift (such as to administer medication). More often you’ll get visits from nurse techs who take vital signs, help with toileting or bathing, draw blood for tests, etc.
And, at usually pretty unpredictable times, various specialists will stop by, such as a physical therapist or neurologist.
Most of these folks jot down some notes in some way while they’re working with a patient, and sometimes they enter them into the electronic medical records system right away, and sometimes they do it a few hours later when they have a spare moment.
You’ll need some note-taking method that works for you – paper, electronic, whatever lets you switch from whatever you were doing into “note-taking mode” in about five seconds and instantly note down a symptom or look back to what happened yesterday. Every time a nurse tech came to check my mom’s vital signs, I wrote down her blood pressure and blood sugar in my notebook, so it would be easy for me to notice patterns or quickly refer to that if we noticed something odd happening later. I could write by feel in a paper notebook even while startled awake in a dark room at 4am; if that won’t work for you, use something else.
Even if you’re usually fine with keeping everything in your head without written notes, this situation will be more chaotic and complex than usual. You will accumulate questions and requests during the long waits, and it’s incredibly helpful to have one place to note them down. When a nurse, hospitalist, or specialist popped into the room, I found it so valuable to be able to quickly consult my notes and ask all the questions that my mom or other family members or I wanted to ask, and scribble down answers to refer to later! That also made it a lot easier to update others via phone calls or text messages. And it helped me organize information to efficiently do the “shift change” briefing when a new nurse came in, or when my sister came to relieve me at Mom’s bedside.
And, while the patient’s in the hospital, you’ll need a robust device, such as a smartphone or tablet, so you can log into their electronic medical records system, if they use one (more and more do). For instance, if the hospital uses Epic, then the patient has a MyChart account and can delegate access to other people, and a hospital stay gets logged in that account. You can access it to keep up with test results and with the doctor’s progress notes. Reading those will give you so much context and information. During rushed conversations with doctors, I sometimes didn’t catch key details, and reading their notes significantly helped. For instance, at one point I saw for the first time in the hospitalist’s notes the phrase “poor prognosis” and I think no one had yet said that phrase aloud to us.
As a caregiver, you’ll need to understand what medications and treatments the patient’s receiving. That means knowing
Do the medical folks actually tell you all of these things? Sometimes! In my experience, US doctors, nurse practitioners, and other providers are way more likely to actually orally tell patients and caregivers this stuff than are Indian providers, and to give you written handouts. But you will likely need to also look stuff up yourself.
Basic “what is this” research: English Wikipedia is genuinely a great place to start so you can understand what a medication or treatment is for, how it works, what to watch for, and what major systems it interacts with. I also got a lot from the Mayo Clinic and WebMD. Underappreciated resources I think more caregivers should know about: the US National Institutes of Health Dietary Supplement Fact Sheets (including the more detailed ones targeted at health professionals), and PubChem which makes it so much easier to figure out a drug’s brand name in other countries and reliably understand its pharmacological mechanisms.
“Something’s going wrong” or “should we do this?” research: You should know about the drugs.com interaction checker and about the free published scientific research you can read via PubMed. When I was alone with my mom and she revealed to me that she’d been having horrible hallucinations for hours, it was papers on PubMed, cross-referenced with PubChem and some English Wikipedia articles, that helped me figure out which of her medications was causing it. Also, to understand common problems people run into with a particular kind of treatment, browse forums specific to the condition or treatment, such as the home dialysis forum.
“How should we do this?” research: To take care of my mom, my sister and Leonard and I learned how to do several at-home medical procedures: cleaning and dressing a wound, taking her blood pressure, administering insulin injections, performing peritoneal dialysis exchanges, and more. To supplement the in-person trainings and handouts, I searched the web. I could sometimes find manuals and videos made and published by hospitals for practitioners to use (example), or even chapters from textbooks. These were great. Going through these often gave me a lot more systematic explanations of what to do and why, and thus helped me be more prepared to react to accidents productively. And checking out materials from hospitals in different countries helped me understand how different medical authorities mildly disagreed, which gave me a sense of the margin of error on things. For example, if nurses in the US deliver a liter of some solution via a drip lasting 3 hours, but the guideline in Ireland is to do that over 3.5-4 hours, then there’s probably some leeway and it’s okay for the procedure to take 3.5 hours.
If the dying person cares about donating their organs or their whole body for use after they die, plan ahead, and look up what forms you need to sign in your area -- ideally ahead of time.
It was important to my mom to donate her body to science, for use by researchers and students. She'd planned to donate her body to a medical college. But there are eligibility requirements for whole-body anatomical donation, and as it turns out, because of various problems that cropped up in the last several months of her life, most of the relevant institutions in North Carolina were not interested in her body. Fortunately, we found this out several days before she died, and learned of a good Plan B: mortuary schools. Mortuary schools need to teach their students to be able to handle all sorts of cadavers, so their eligibility requirements are a lot more lenient. Thus, right after she died, we called our Plan A institution, a medical school. They asked a few questions and determined she was not eligible. Then we called Plan B, a mortuary school, and finalized the arrangements to donate her body to them.
Heads-up: Whole-body anatomical gifts require donation forms. Some institutions will only send them to you after the person dies (electronically, via DocuSign or something similar); some make it more convenient by offering the forms for you to fill out, sign, and fax, email, or mail in ahead of time. Some of these forms may need to be signed specifically by the next of kin, even if that's not the decedent's executor! And, in many cases, you'll need to get the form signed by 1-2 witnesses unrelated to you or the decedent. Some hospitals and hospices have policies against letting their staff witness legal documents for patients and their families, so you can't count on easily grabbing witnesses that way. (One friend planned a few simultaneous friend visits while in the hospital, so they could be witnesses to document-signing and then have some low-key hanging-out time together afterwards.)
You do not want the hours immediately after a death to get taken up with donation paperwork and stressful "who can I reach who will witness this document?" wrangling; do this ahead of time if you can. We did, and it was really helpful. You don't have to wait till the patient's on their deathbed! You can make these arrangements years in advance, and review them every few years as you review other end-of-life paperwork.
Prescription drugs: When a sick person dies, they probably leave behind some prescription medications. The pharmacy can take back the leftovers and dispose of them safely. But that's wasteful. In some US states, including North Carolina, it is legal to donate unused, non-expired prescription drugs to a free clinic or a drug repository program so that they can be re-prescribed and given away to someone who needs them! We did this and were so glad the meds could actually get used. I haven't looked too thoroughly into SIRUM but that may also be an option for donation. Consider also checking with your local mutual aid group for other options.
A year ago, I thought "palliative care" and "hospice" were synonyms. At least in the US, they're not!
"Palliative care" is a set of services to help people living with a serious illness. Palliative care providers can include pain specialists, social workers, and folks in other specialties. They try to take a general look at quality of life (this can include visits to the home), offer suggestions and prescriptions for how to improve quality of life and help with symptoms, and help the patient and their caregivers understand the current course of medical treatment and their options. They are particularly trained in talking with patients and caregivers about a patient's possible choice to end "aggressive" or "curative" treatment, which means stopping the medicines, procedures, etc. that are trying to cure the condition, and instead focusing on the patient's comfort and quality of life as death approaches, which is called "switching to comfort care" or more broadly "hospice."
Tip: if your other providers start saying "have you talked with palliative care?" or "this is a good conversation to have with palliative care," that often implies, "the prognosis is getting poorer and you should start thinking about planning for end-of-life, but I, a medical provider, feel constrained not to say that bluntly to you right now."
"Hospice" in the US is an approach, not necessarily a place. Many people do at-home hospice, where the patient lives at home and an agency helps by sending nurses to occasionally check in and provide equipment, medication, and a little training. Some people go to a residential hospice facility where there's 24/7 nursing support available.
(Heads-up warning: some hospice agencies say you'll get on-call support to aid you while doing hospice at home, and then you need a nurse or nursing assistant, and they won't/can't send anybody, particularly nights and weekends. This unpleasantly surprised a friend a few months ago.)
Here's the insurance wrinkle, which a friend of mine ran into recently with her dying parent: Many dying people in the US get their health insurance via the government program Medicare. The way Medicare thinks about hospice services is: the only reason you would need to be in a residential hospice facility, instead of doing hospice at home, is if the patient has a specific medical need that requires a hospital-like setting, such as administration of pain medication via IV (intravenously -- that is, a continuous drip into the patient's veins). And so, if the patient doesn't have an explicit care need of that type, residential facilities aren't covered, and Medicare will only cover at-home hospice. "There's only 1 caregiver at home and they're exhausted" doesn't count. "We have a few friends and family who can take turns, but none of them are physically strong enough to move the patient when she needs that" does not count. So you may find that a patient is not eligible for Medicare coverage for a resident hospice facility because, according to Medicare, his care needs would not require that setting, and could be taken care of in a home with sufficient helpers (even if you, in reality, do not have those helpers available).
Once you're warned of that requirement, it helps you better understand the relevant care management choices and their implications. It is worth talking explicitly with the patient's doctors about which courses of medical treatment require "a hospital-like setting" in order to fulfill that requirement for coverage.
Also, watch out for pressure to discharge from hospital to hospice before the patient’s ready for that, as some patients have been prematurely pushed into poorly-run home hospice. (We didn’t run into that ourselves.)
Several days after going into the hospital, my mother started having unusual trouble knowing the time of day; she would say "isn't it time for dinner yet?" when she'd just had lunch an hour previous. Her doctor told us that this is unfortunately typical: "hospital delirium" frequently happens when a patient, especially an elderly patient, is stuck in the same kinda-featureless hospital room for many days in a row. Their sleep's interrupted every few hours for vital signs checks, lighting is weird, maybe they're stuck in the same bed for days, and they start to lose track of time. That can be just the start and the delirium can progress to hallucinations. It probably would have come on even faster if my sister and I had not been by her side pretty much 24/7 to keep my mom company, talk with her, and so on.
My mom started to feel like she was falling (especially when someone was adjusting the bed's height or tilt), or like she couldn't figure out where her legs were. Some things that helped:
Later, as her kidneys failed, her delirium grew more frequent, and she had conversations with people who weren't there, or asked questions about people long-gone, or briefly forgot who I was. I have always had an aversion to lying, and I lied to my mother more in those few days than I had my whole life up till that point, and I hated it. I said that such-and-so had just stepped away and would be back soon, or I mimed that yes, I was putting the okra and spinach in the fridge, or I playacted the person she thought she was talking with. At first I could not often bring myself to “yes-and” in an improv style, which is what experts recommend we do.
But it helped when my friend Julia pointed out that this, too, was palliative care. That made sense to me; some pain-relieving drugs, for instance, are too habit-forming to dispense to most patients, but we make an exception for the dying. Similarly, as a general rule, my respect for everyone's autonomy requires that I be honest with them, but a delirious dying person needs reassurance and comfort more than they need that honesty. So that helped me get more comfortable with “yes-and”ing.
(I know few people are as stubborn about so-called "white lies" as I am, but I figure readers of my blog are more likely than the median person to be like me in this respect, so, I hope this helps.)
One part of my mom’s delirium had to do with urinating and defecating. It’s tough to talk about incontinence, and I recognize that it’s hard on a patient’s dignity to admit when they can’t take care of their own toileting. But the taboo on discussing it means a lot of disabled people suffer more than they have to, so I’ll tell you what happened with my mom.
My mother grew weak enough that she could not make it to the toilet. The hospital staff brought in a bedside commode (a movable chair with a built-in receptacle for waste), and she wore an adult undergarment (basically a diaper) for backup. At first she could usually use the commode, and the undergarment was a backup. She never got used to deliberately peeing or pooping in the diaper, and really wanted to get up to use the commode, but sometimes we couldn’t summon the staff to help get her out of bed in time, and so she’d have an accident in the diaper and feel unhappy about it.
Then she grew weaker, and the staff assessed her fall risk as great enough that they no longer permitted her to get up from bed at all. And once the delirium grew worse, she was very upset about why we wouldn't let her go to the toilet. No amount of explanation could persuade her, and I think the only thing that worked was -- with two people ready to catch her -- allowing her to try to sit up at the side of the bed. She then realized that she just didn't have the strength to do it, and lay back down.
In the last few weeks of my mom's life, unfortunately there were many times she was agitated. To help her calm down and rest (especially after her sleep was interrupted by nurses checking vitals every 4 hours), I tried to play soothing music. I had run across a Tumblr post about a particularly relaxing song called "Weightless," devised by the band Marconi Union in partnership with sound therapists (here's an easier-to-read version of the post). I loaded up the 10-hour looping version of the song via the YouTube app on my or Mom's smartphone and, at least for a day or two, it did help lull her back to sleep sometimes. And it helped me get back to sleep too when I needed it, on that couch by her bed.
For the first ten days of the hospital (then hospice) stay, we kept a constant vigil by her bedside. But we had to stop, partly because (as an immuno-compromised person in a hospital) she had caught COVID for the first time. I viscerally disliked the idea of her being alone save for medical checkins. I remembered Gordon Atkinson, Real Live Preacher, writing about visiting someone in a hospice facility, leaving for the night, and leaving some beautiful music playing using a CD player on repeat. That music kept him company, and was playing when he died. I decided I would feel less bad about Mom dying alone if she at least had the company of some of her favorite music.
Fortunately -- thanks to help from other family members -- she already had a set of YouTube playlists of favorite prayers and songs, so I used her smartphone to add all those videos to a many-hour mega-playlist and set that to play within the YouTube app. I tried as much as possible to turn off notifications to avoid situations where some app would interrupt the music and then wait futilely for user interaction. I was annoyed that it was hard to get the playlist to repeat, and that Mom had to endure ad interruptions, so my sister suggested I sign up for the YouTube Premium free trial and then use the YouTube Music app to play the playlist continuously and without ads. This worked great. A few of the videos on her playlist evidently weren't available within YouTube Music but most of them were.
(Recently I learned of some other options in this Ask MetaFilter thread - some of them work even if there is no wifi available.)
Mom did eventually die while no one else was in the room, and I do take some comfort in knowing that at least she had the company of music she enjoyed.
And, a few days before she died, my sister and I stood by her bed and sang together, the songs she'd loved to hear us sing, the showtunes and folk songs we'd sung together countless times in the back of the car on family trips. One last time.
It was, of course, sad to witness my mother's decline and death, and helping could be hard. But I was somewhat prepared, because of personal experience with my mother-in-law and elder friends, and because of some past reading.
I'd read articles by Atul Gawande on his experience as a doctor to the dying (example, another), many of which are collected in his esteemed book Being Mortal. I’d learned from Michael Crichton's memoir Travels, which included thoughts about end-of-life care from his time in med school. I'd read Cassie Alexander's Year of the Nurse pandemic memoir, which detailed patients' lives and deaths, and Ruth Coker's memoir All The Young Men about caring for gay men dying of AIDS in Arkansas in the 1980s and '90s. I'd read Florence Nightingale's Notes on Nursing: What it is, and what it is not, a cranky and thoroughgoing text on management that covers the healing environment as a whole. I’d read Thomas Lynch’s The Undertaking: Life Studies From the Dismal Trade, by a funeral director. And one case study in Irvin Yalom's Love's Executioner discusses therapy for a dying person.
I’d read blogs and Internet comments by people doing eldercare. For instance, blogger siderea listed “Questions for Assisted Living Facilities” and described “What Assisted Living Is” ("One of the potentially confusing things is that a given institution or organization have more than one of these facilities, sometimes even under the same roof..."). And, on MetaFilter, the funeral director ColdChef frequently shares guidance to the bereaved.
For ease of reference, some books I mentioned earlier in this post:
If you need this then you have my sympathies, and I hope you can bear it ok. And I hope this helps you, a little bit, to bypass some of the unpleasant surprises and research I went through.
[footnote 1] My friend Mel Chua writes:
“I might add something here for folks who might have PTSD and/or neurodivergence and/or whatever else makes people really used to running on adrenaline, deep in hyperfocus, ignoring physical needs and tunnel-visioning down on IMPORTANT THINGS!!! THAT NEED ME!!! because. Yes. It’s all important. And you’re contributing some crucial care in this situation! And you probably can synthesize complex things for hours after a neurotypical person would have dropped after only being able to manage half as many parallel threads. And there are endorphins. And it feels good and is also a way to shut out some of the pain by relentlessly focusing on Helping With Stuff.
And you’re also losing context in that tunnel vision, and you’re likely to cross… not so much the line between ‘self care is decent’ and ‘oops self care slipped a little,’ but go from the zone of ‘self care is decent’ to ‘I am so burnt out that I have lost the capacity to detect that I’m burnt out and need to stop immediately.’
[footnote 2] Specifically: research which upscale cookie, brownie, doughnut, or similar pastry or sweet treat make locals in the that region think "oooh fancy!", and place the order for ~24 of those.
It's wise to get a big box of sweet treats to have delivered to the unit's nursing station with a note of appreciation from the patient's family (or just to buy in person and then hand-deliver oneself to said nursing station). And then they keep them in their break room or similar. And every time a medical provider comes into the room who has not yet been informed of them, we make sure to say at some point, "by the way, have you had a chance to grab a donut yet?" This (1) conveys our appreciation and (2) lubricates interaction/helps them feel positive about the patient and their family. While a patient's in the hospital, I'd do this about once a week.
We especially want to do this when we worry that our loved one is not getting sufficient attention at a hospital with poor nurse-to-patient staffing ratios, or to help compensate for the extra work needed to take care of a patient who has unusual needs.
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