Are your parents not quite dead?
Lucky you. This site is geared toward those who have already lost one or both parents, but maybe you just like to be prepared. In that case, here are some things to go over before coffins come into the picture.
Jump to: To-Die List | Help! What’s hospice? | Do I doula? | Self-care skeleton says…
To-Die List
For most people—excluding goth teens and folks who work in the death care industry—death isn’t a popular conversation topic. My mom was a therapist, and she still didn’t like to talk about it. But if you can get your parents to open up about their end-of-life wishes, it will make their end-of-life a lot easier for you, and a lot more comfortable for them. If you need a to-do list—or rather, a to-die list—you can start with the questions below.
Do you have an advance directive/living will to indicate what you want for end-of-life care?
What do you want to happen to your body after death? Burial? Cremation? (Depending on the state where you live, there may be other options as well.)
Do you have a prepaid burial or cremation plan? If so, where is that information?
Do you want a funeral or memorial service? Where do you want it to be? Do you want to include any specific religious or cultural customs? Any particular songs or readings?
How do you feel about donating your organs after death?
Who is your power of attorney? Who is your medical power of attorney/health care proxy? Where is that paperwork?
Do you have a will and/or living trust? Where is that paperwork? Who is the executor and/or successor trustee?
Do you have a list of all your major assets (cash, investments, properties, etc.)? Where is it?
If your parents have a living trust, ask them to indicate which assets are included in the trust.
Where do you keep your other important paperwork? Property deeds, car titles, insurance information, financial statements, etc.
Do you have a lawyer? Accountant? Financial advisor? What’s their contact information?
What bank(s) do you use? What kind of accounts do you have there? Do you have a safe deposit box?
Have you written down a list of usernames and passwords for all your accounts? (Seriously—all your accounts.) If not, can you do that now?
Who do you want me to notify when you die? What’s their contact information? Is there anyone you don’t want me to notify?
What aspects of your life would you like me to include in your obituary?
Have you added a legacy contact to your social media accounts? If not, can you make me one?
Need more help starting these conversations with your parents? There’s a whole nonprofit for that! Check out The Conversation Project.
Help! What's hospice?
If your parents are suffering from a serious disease like cancer, you’re going to hear the terms “palliative care” and “hospice care” thrown around. Palliative care is when you treat the symptoms of a disease—but you’re also getting treatment for the illness itself. A cancer patient may be treated with chemotherapy; any treatments for pain associated with that chemotherapy would be palliative care. Hospice care is only treatment for the symptoms of a disease, rather than the disease itself. The focus is making a patient as comfortable as possible while they die. (Here’s a more detailed explainer from the National Institute on Aging.)
Both my parents died in hospice care, so I have some experience with this.
Where does hospice care occur?
Lots of places! My mom received hospice care in our home. My dad was already in the hospital being treated for his cancer, and they kept him in that same hospital when they transitioned him to hospice care. There are also separate hospice facilities.
Does insurance cover hospice care?
Sometimes. Totally depends on the plan you have. Same with Medicare. The National Hospice and Palliative Care Organization (NHPCO) has some articles on their website about the financial aspects of hospice care.
How long does hospice care take?
I regret to inform you that I’m not an oracle—just a writer. Death is different for everyone. Sometimes a patient can be in hospice for months. My mom was in hospice only for a few days. With my dad, it was about two weeks.
What should I expect while my parents are in hospice?
Again, every person has a different death experience. Some days your parents may seem fine. Some days they may seem like they’re getting better. (Don’t get your hopes up: if they’re in hospice, they’re not getting better.) But eventually, they’ll enter the active dying phase, when their body begins to shut down.
There are a few unsettling or unpleasant things that may occur during active dying you should know about:
Your parents will likely become confused at some point—they may even lash out at you. Both my parents insisted I didn’t love them, so that was fun. They don’t mean it, but it still hurts.
Eventually your parents will stop eating and drinking. It’s a completely normal part of dying, but it feels awful when you can’t get them to sip water anymore.
Your parents may hallucinate and even reach for things that aren’t there. Both my parents did this—it was eerie. The good news is it’s usually not eerie for them. Typically it’s best to affirm their hallucinations. Ask them: “what do you see?” Look in the same direction, etc.
Your parents will probably have a catheter inserted at some point, and while it ends up relieving much of their discomfort, it is horrifying to watch it go in. Steel yourself—leave the room if you have to.
The “death rattle” is definitely a thing—but it only happens because their mouths are hanging open for so long and their muscles aren’t working normally. It’s not as ominous as it sounds.
Since they can’t advocate for themselves, you will have to ask for more pain and/or anti-anxiety medication for your parents. Don’t worry that you’re overdoing it. If your parents are displaying signs of pain or fear—wrinkled brows, clenched teeth, etc.—talk to the hospice staff.
Hearing is the last sense to go, so keep talking to your parents. Even if they can’t understand you, they can hear you. Play songs they like.
While we have this ideal of dying surrounded by our loved ones, your parents might not let go until you leave the room. My dad was this way—he waited until my sister was asleep and I was gone to pass.
Here’s the good news: hospice workers are awesome. They will answer any questions you have before you have them. My mom’s hospice nurse called us over when she was about to die, because this nurse was so good at her job that she could tell us exactly when she was going to die. Many hospice organizations provide other resources like grief counselors and funeral home/crematorium recommendations. Often hospice volunteers can take over if you need a break in your vigil to grab dinner or get some rest.
If your parents have to die (and eventually they must), hospice is probably the best way to do it.
Do I doula?
You’ve probably heard of birth doulas, but have you ever heard of death doulas? End-of-life doulas support dying people and their families through this enormous transition in various ways:
Death education and planning (your parents can’t die their best death without knowing their options)
Legacy work (getting all the relational/spiritual/financial/physical stuff in order)
Eleventh hour work (literally sitting with your parents while they die and helping the family accordingly)
Post-mortem care (helping families with rituals and caring for the body—sometimes organizing and/or officiating memorials, too)
Do you need a death doula? That’s up to you and your parents. The International End-of-Life Doula Association (INELDA) has more information and a directory to find doulas in your area. The Deathwives—two doulas and educators in Colorado—also host a referral network on their website. Personally, I wish we’d had one. My mom would have been into it, but my dad would have been a harder sell.
Some exciting news: I was certified as a death doula in March 2024. I figured death was my whole brand already thanks to this site, so I might as well make it official. When and if I start actively taking clients, you’ll be the first to know.
Self-care skeleton says...
Find something to do with your hands. That goes for your not-quite-dead parents and for you. My fine motor skills suck, so I knew I couldn’t pick up knitting or anything similarly useful. But my friends got me these silicone Pop It! Pets—yes, a children’s toy—and I couldn’t put them down. The unicorn is my favorite, surprising no one.