Heather opens up ab…

Read more

Which means that when someone is dying, and the goal is no longer to treat but to comfort, the system can feel like it’s speaking a language you never learned.

Here’s a crash course in what you actually need to know.

Understand Who Is On the Team and What They Do

One of the most disorienting parts of end-of-life care is the sheer number of people involved. Doctors, nurses, social workers, chaplains, case managers, specialists. Everyone has a role, and not all of them communicate with each other as well as you’d hope.

Take notes. Write down names and titles. Ask each person what their specific role is and who the best point of contact is for questions. In a hospital or inpatient setting, the attending physician is usually your main contact for medical decisions, but the nurse is often the most accessible and most informed about day-to-day changes.

Don’t assume information is being passed along. Confirm it yourself.

Having a death doula on hand to help herd all these cats can be invaluable.

Learn the Language

Medical terminology during end-of-life care can be genuinely confusing, and the confusion often leads to decisions being made without full understanding of what’s actually being agreed to.

A few terms worth knowing:

DNR (Do Not Resuscitate) means that if the heart stops, no CPR will be performed. This is not the same as “do not treat.” It simply means no resuscitation attempt.

Comfort care or palliative care means the focus is on managing symptoms and quality of life, not curing the illness. It can happen alongside curative treatment.

Goals of care is a phrase you’ll hear often. It refers to the conversation about what the patient wants, what matters most to them, and what medical interventions are aligned with those wishes.

If something is unclear, ask for it to be explained again. Then ask again. You are not being difficult. You are advocating.

You Have the Right to Ask Questions and Push Back

This is the part a lot of families don’t realize until it’s too late.

You can ask for a family meeting with the care team. You can request a second opinion. You can ask what happens if you choose not to pursue a recommended treatment. You can ask what dying will look like if a certain intervention is stopped. You can say “I need more time before we make this decision” and that is a complete sentence.

Hospitals have patient advocates and social workers specifically to help families navigate exactly this kind of situation. Ask for them. Use them. That’s what they’re there for.

And if something feels wrong, say so. Not every family member who pushes back is being difficult. Sometimes they’re the only one paying close enough attention.

Get Paperwork in Order Before a Crisis

The worst time to figure out advance directives is in the middle of an emergency. The best time was years ago. The second best time is right now.

An advance directive or living will outlines what kind of medical care a person wants if they can no longer speak for themselves. A healthcare power of attorney designates someone to make those decisions on their behalf.

In Ohio, there’s also a document called a DNR Comfort Care order, which is specifically for people with serious illness and communicates wishes to emergency responders and care teams outside of a hospital setting.

If these documents don’t exist yet, a social worker, attorney, or yes, a death doula can help your family understand the options and get them completed. Do not wait.

Transitions Between Care Settings Are Often the Hardest

Moving from a hospital to a rehab facility to home to hospice involves a lot of handoffs, and handoffs are where things fall through the cracks. Medications get missed. Information gets lost. Families get contradictory instructions from different providers.

Every time there is a transition, ask for a full medication list, a summary of the current care plan, and clear instructions for who to contact if something changes. Don’t leave a new facility or setting without knowing exactly who your point of contact is.

If your loved one is being discharged to home with hospice, make sure the hospice team has been contacted and a visit is scheduled before or shortly after arrival. There should be no gap in support.

You Don’t Have to Do This Alone

The healthcare system is complicated on a good day. During end-of-life care, when emotions are high and decisions feel enormous, it can feel completely overwhelming.

A death doula can sit with you in those waiting rooms. Help you prepare questions before a care team meeting. Translate what was just said in that conversation that left you more confused than when you walked in. Advocate alongside you when your voice feels too small or too shaky to carry the weight.

You don’t need to become a medical expert to navigate this well. You just need support, information, and someone in your corner who isn’t afraid of any of it.

That help exists. Please reach out and use it.

Read more

But it happens more than it should. Families assume hospice is just something the hospital arranges, that all providers are roughly the same, that there isn’t really a choice involved. And then they find themselves in the middle of one of the hardest experiences of their lives with a team that isn’t showing up, literally or emotionally, and no idea they had the power to do anything about it.

You have more power than you think. Let’s talk about how to use it.

Hospice Is Not Automatically Assigned to You

This surprises a lot of families. When a doctor recommends hospice, they may refer you to a specific agency, but that referral is not a requirement. It is a suggestion. And it’s possible they’re getting a kickback from the hospice they refer you to, bear that in mind too.

You are allowed to research your options. You are allowed to ask questions before signing anything. You are allowed to choose a different provider than the one recommended, and you are allowed to switch providers after you’ve started if the care isn’t meeting your needs.

Hospice agencies are not all created equal. Quality, staffing, responsiveness, and culture can vary significantly from one organization to the next, even within the same city.

Questions to Ask Before You Choose

When you’re evaluating a hospice agency, treat it like an interview. Because it is one.

Some questions worth asking:

Are you Medicare certified? Medicare certification requires agencies to meet federal standards for care. It’s a baseline, not a guarantee of quality, but it matters.

What is your nurse-to-patient ratio? Staffing levels directly affect how responsive a team can be. If a nurse is managing an enormous caseload, your calls may not get returned as quickly as you need.

Who do we call after hours, and how quickly will someone respond? A good hospice has 24-hour support. Find out if that means a real nurse picks up the phone or if it goes to a general answering service.

Will we have a consistent team, or will different people rotate through? Consistency matters. A lot. Having the same nurse and aide who know your person, their preferences, and their condition is completely different from meeting a new face every visit.

What services are included? Hospice should cover nursing visits, aide services, social work, chaplain support, medications related to the terminal diagnosis, and medical equipment. Know what’s included before you sign.

How do you handle a situation where we’re unhappy with a specific caregiver? This one is important. Ask it directly. A good agency will have a clear and non-defensive answer.

Look Up Their Track Record

Medicare publishes quality data on hospice agencies through a tool called Care Compare at medicare.gov. You can look up agencies in your area and compare them on metrics like how often they provided the right care, how families rated their experience, and whether they’ve had any compliance issues.

It takes about five minutes and it’s worth every one of them.

You can also ask around. Palliative care teams, hospital social workers, and yes, death doulas often know which local agencies have strong reputations and which ones generate complaints. Don’t be shy about asking people who work in this space what they’ve observed.

Ask a local doula too! We know who’s on the up and up and who may have failed a previous client.

Know Your Rights If Something Goes Wrong

If a hospice provider is not delivering on what was promised, you do not have to accept it.

You can request a different nurse or aide. Agencies have multiple staff members and you are within your rights to ask for someone who is a better fit. You don’t even need a dramatic reason. “This isn’t working for our family” is enough.

You can file a complaint. Every hospice agency has a process for this, and your state also has a hospice licensing board that accepts complaints.

You can switch agencies entirely. If the care is consistently poor, you can discharge from one hospice and enroll with another. Your hospice team should be able to facilitate this, and if they won’t help, a hospital social worker or patient advocate can.

Switching is not starting over. Your loved one’s care continues. You simply have a new team.

Trust Your Gut

When you meet with a hospice team for the first time, notice how they make you feel.

Do they rush through the intake paperwork or do they slow down and actually talk to you? Do they look at your person as a human being or as a case number? Do they answer your questions directly or deflect?

End-of-life care requires trust. If something feels off in that first meeting, pay attention to that feeling. You are not being too picky. You are protecting someone you love during one of the most vulnerable seasons of their life.

The right hospice team will feel like a hand on your shoulder. Not one more thing to manage.

A Note to Anyone Who Has Already Been Through a Bad Experience

If your family went through what so many families go through, showing up for someone they loved with a hospice team that let them down, I want you to know that was not how it was supposed to go. You deserved better. Your person deserved better.

And if you’re not there yet but heading in that direction, please use this information. Ask the questions. Look up the ratings. Trust your instincts.

Nobody should have to demand basic kindness while they’re saying goodbye.

If you need help looking for the right care please reach out!

What does grief actually look like when the loss is sudden, traumatic, and completely shatters the life you knew? In this powerful and unfiltered conversation, author, coach, and psychedelic support coach G. Scott Graham opens up about the traumatic death of his husband — and what the experience taught him about the limits of clinical language, the courage it takes to feel real emotions, and what healing actually requires.

You can find G Scott here: https://gscottgraham.com/

Want to Join the Good Grief Society? https://www.nikkithedeathdoula.com/the-good-grief-society

Support me on Patreon! ⁠https://www.patreon.com/nikkithedeathdoula⁠

Get merch and find any other info you need on the podcast here: https://www.nikkithedeathdoula.com/podcast

Read more

In this conversation, Jackie opens up about what it means to lose a spouse without warning, how writing became her lifeline, and why she believes grief isn’t something you get over, it’s something you learn to carry.

Whether you’ve experienced loss yourself, love someone who has, or simply want to hear a story about how deep love can go, this episode is for you.

You can find Jackie here: jackieldisch.com

And her book:Click here

Want to Join the Good Grief Society? https://www.nikkithedeathdoula.com/the-good-grief-society

Have a burning question for Nikki the Death Doula? Leave me a message here: https://www.speakpipe.com/msg/s/458190/1/9pa2xynf4iwbj6p1

Support me on Patreon! ⁠https://www.patreon.com/nikkithedeathdoula⁠

You can find me here: https://linktr.ee/nikkithedeathdoula

Get merch! https://good-grief-podcast.printify.me/

You’re crying every day and your brother hasn’t shed a tear. Your sister wants to talk about Mom constantly and you can barely say her name out loud yet. Someone wants to clean out the house immediately and someone else would like to leave everything exactly as it is until further notice, possibly forever. One of you is holding the whole family together with both hands and one of you has completely disappeared into their own life and isn’t returning texts.

And underneath all of it, this low hum of something that feels a lot like anger, hurt, or betrayal. The specific sting of grieving next to someone who is doing it completely differently than you are.

Welcome to sibling grief. It is a lot.

Same loss, completely different experience

Here’s the thing that gets lost in the fog of early grief: you did not all lose the same person.

I mean, you did. Same human, same death, same funeral. But your relationship with that person was entirely your own. Your memories, your wounds, your history, your version of who they were and what they meant, that belongs only to you. Your brother’s relationship with your dad was shaped by twenty-five years of interactions you weren’t in the room for. Your sister’s grief is filtered through a bond that had its own language, its own unresolved chapters, its own particular tenderness.

You are all grieving a loss. You are not grieving the same loss.

This reframe does not make the conflict disappear. But it does make it make a little more sense.

The greatest hits of sibling grief conflict

Let’s just name them. These are the ones that come up again and again.

The Stuff. Someone wants to divide it immediately and someone wants to keep everything and someone already took the thing you wanted and nobody talked about it first. Belongings carry so much weight when someone dies. They become proxies for love, for fairness, for who mattered most. Fights about furniture are almost never actually about furniture.

The Caregiver Rift. If one sibling did the heavy lifting of caregiving, that sibling is often exhausted, grieving, and quietly (or loudly) furious that they did it largely alone. The siblings who weren’t there may be carrying their own guilt about that. Both of those things are painful. Neither automatically makes someone the villain, even when it feels that way.

The Performer vs. The Disappearer. One person holds the family together, handles the logistics, makes the calls, keeps showing up. One person goes quiet, pulls back, handles their grief privately and internally. The performer often reads this as abandonment. The disappearer often doesn’t know how to be witnessed in their pain. Neither style is wrong. Both feel incredibly lonely.

Grief timelines that don’t match. You’re still in the thick of it six months later and your sibling seems to have moved on. Or you’ve found your footing and your sibling is falling apart and you don’t have the capacity to hold them right now. Grief doesn’t run on a shared schedule and it can create a painful kind of distance when you’re not in the same place at the same time.

What this conflict is often really about

Grief cracks us open. And when we’re cracked open, every old family dynamic, every unhealed wound, every years-old role we got assigned in childhood, comes rushing back in.

The responsible one. The difficult one. The favorite. The forgotten one. The one who always had to hold it together. The one who always got to fall apart.

You thought you’d outgrown those roles. Then a parent died and suddenly you’re sixteen again at the kitchen table, and somehow it’s the same argument you’ve always had, just wearing a different shirt.

Family grief doesn’t create dysfunction. It reveals the dysfunction that was already there, waiting.

How to survive grieving next to people who are doing it differently

You are not required to grieve in the same way, on the same timeline, with the same expression. That was never the deal, even if it felt like it was supposed to be.

A few things that can help, even a little:

Lower the expectation that your siblings will be your primary support right now. They are in the water too. They may not have a hand to reach back. Finding support outside the immediate family, a grief group, a coach, a therapist, a friend who knew your person, can take some of the pressure off relationships that are already strained.

Say the thing carefully, when you’re ready. Not in the hot moment, not over text. But if something is sitting between you and a sibling, some hurt that happened in the immediate aftermath of the loss, it is worth naming eventually. Grief has a way of calcifying unaddressed resentment into something that lasts for years. You don’t have to resolve everything. But naming it matters.

Give the benefit of the doubt, once. Just once. The sibling who didn’t cry at the funeral is not heartless. The sibling who took three weeks to call you back is not indifferent. The sibling who already gave away the sweaters is not a monster. Grief makes people do strange things, behave in ways that look nothing like love but are coming entirely from love. Try, once, to read it that way.

And then, if needed, grieve separately. Not every grief journey has to be a group project. It is okay to find your own path through this, even if it means some distance from people you love, for a while.

You are not a bad sibling for grieving your way

Whatever you’re feeling toward your family right now, the anger, the distance, the hurt, the exhaustion, the complicated relief, the guilt about the complicated relief, none of it means you loved the person who died any less.

Grief is not a competition. It is not a loyalty test. It is not a measure of who was the better child or who showed up more or who deserves to hurt the most.

You all lost someone. You are all doing the best you can with the very limited tools humans are given for this.

That’s enough. You’re enough.

Even when it doesn’t feel like it at the kitchen table.

Nikki is a death doula, grief coach, and host of the podcast Good Grief with Nikki the Death Doula. She helps people navigate the hard, human stuff that most of the world is still too scared to talk about.

Oooohh blast from the past here!! I loved this show growing up. Anyway….

Read more

I sat down with Liz Balli of Evergreen Memorials, for an honest and compassionate conversation about death, grief, and the profound importance of honoring those we’ve lost. Liz brings a thoughtful, human-centered perspective to an industry that touches every single one of us.

We explore the evolving landscape of burial practices and dig into what the act of memorialization really does for the living. Whether you’re navigating a recent loss, thinking ahead for your own end-of-life planning, or simply curious about how we as a culture relate to death, this episode will leave you with both comfort and clarity.

Want to Join the Good Grief Society?

https://www.nikkithedeathdoula.com/the-good-grief-society

Support me on Patreon! ⁠https://www.patreon.com/nikkithedeathdoula⁠

You can find me here: https://linktr.ee/nikkithedeathdoula

Get merch! https://good-grief-podcast.printify.me/

“Everything happens for a reason.”

“God needed another angel.”

“At least they’re not suffering anymore.”

“They wouldn’t want you to be sad.”

Oh, sweet, well-meaning humans. We really do try.

If you’ve ever lost someone, you’ve collected a few of these gems. Maybe you smiled politely while internally screaming. Maybe you nodded so many times your neck hurt. Maybe you genuinely don’t remember a single thing anyone said to you in those first days because grief does that, it swallows whole conversations whole, and all you’re left with is the blur and the casseroles.

But the things people say when someone dies? They are a whole category of human experience worth talking about. Because they’re awkward, and sometimes accidentally hilarious, and also, if you look at them sideways, kind of sweet.

The Greatest Hits

Let’s just honor a few of the classics, shall we?

“Let me know if you need anything.”

Said by approximately one thousand people. Followed up on by approximately none. This one comes from a good place, genuinely, but grief doesn’t work like a customer service request. The grieving person is not going to email you a list of their needs. They don’t know their needs. They’re barely remembering to drink water.

“They lived a good long life.”

This one is reserved for older losses, delivered as comfort, and received with a quiet internal “...and?” Because long life or short life, the person is still gone. The math of years doesn’t make the missing easier. (seriously, I had a 102 year old tell me once “that went by so fast”)

“I know exactly how you feel.”

Do you though? Do you really? (Morgan Freeman voiceover: they did not.)

“You need to stay strong for your kids / your family / your dog.”

Ah yes. A gentle reminder to perform strength on behalf of others while your own grief quietly moves into the corner and starts building furniture.

“Time heals all wounds.”

Said with such confidence. As if grief has a lease with an end date. As if you can just wait it out like a bad weather system.

Why Do We Say These Things?

Here’s the part where I actually mean it: we say these things because we love people and we are terrified.

Death is the great disruptor and it makes everyone aware of their own mortality, their own helplessness, and the gaping inadequacy of language. And humans, beautiful chaotic humans that we are, respond to discomfort by filling the silence. (Boy we really hate silence don’t we?) We reach for the nearest thing that sounds like comfort, even if it lands like a lead balloon.

Nobody hands you a script for standing next to a casket. Nobody teaches you what to say when your coworker’s husband dies or your neighbor loses her baby or your best friend calls you from the hospital parking lot. So we pull from the cultural grab bag of grief phrases we’ve absorbed over a lifetime, most of which were written by people who were also, frankly, just winging it.

The intention is almost always love. The execution is sometimes…..a little rough.

The Things That Actually Help

For the record, the things grieving people consistently say helped them most are not particularly eloquent.

“I’m so sorry.” Now this is a classic go-to but I can tell you from experience you get really sick of hearing this one after awhile. So maybe….

“I love you.”

“I’m here.”

Showing up with food, or just showing up. (ask first with food. There is such thing as too many casseroles) Sitting in silence without trying to fix it. Saying the dead person’s name out loud (please, please say their name, it means everything). Texting three weeks later when everyone else has gone back to normal and the grieving person is standing in the cereal aisle absolutely losing it because their person used to like that brand.

You don’t need the right words. You need presence and a willingness to be a little uncomfortable. That’s it. That’s the whole thing. Seriously.

A Permission Slip

If you’ve said any of the things on that list above: it’s okay. Genuinely. (Full admission, I have said at least 2 of these) The people who love you know you were trying. Grief makes the people around it reach desperately for something useful to say or do, and sometimes what comes out is “at least they’re in a better place” when what you meant was “I love you and I would do anything to take this pain from you.”

That translation? Most grieving people can feel it, even through the awkward phrasing.

And if you’re the one who’s grieving and you’ve been on the receiving end of some truly spectacular word choices: I see you. I hope you’ve had at least one moment of dark, private laughter about it. Because sometimes that’s the most human response of all.

Grief and humor are not opposites. They’ve been sharing a couch for a very long time.

Nikki is a death doula, grief coach, and host of the podcast Good Grief with Nikki the Death Doula. She helps people navigate the hard, human stuff that most of the world is still too scared to talk about.

Read more

Want to Join the Good Grief Society? https://www.nikkithedeathdoula.com/the-good-grief-society

Support me on Patreon! ⁠https://www.patreon.com/nikkithedeathdoula⁠

You can find me here: https://linktr.ee/nikkithedeathdoula

Get merch! https://good-grief-podcast.printify.me/

You just show up. You open your laptop, join the Zoom call, answer the Slack messages, and try really hard not to cry in the bathroom between your 10am and your 11am. You smile at the right moments. You say “I’m fine” so many times it starts to sound like a foreign language you’re not fluent in.

And somehow, inexplicably, the rest of the world keeps going. Your inbox doesn’t care that your person died, nor do those pesky deadlines, and the quarterly review doesn’t know your heart is in seventeen pieces.

Grief in the workplace is one of the most under-talked-about experiences there is, and honestly? That needs to change.

Your brain on grief is not your normal brain

You may already know this but grief does genuinely wild things to your brain. Memory fog, trouble concentrating, emotional responses that show up at the most inconvenient times (hi, crying at a spreadsheet, we’ve all been there). It’s science. You’re not broken.

When we’re grieving, our nervous system is under enormous stress. The prefrontal cortex, the part responsible for focus, decision-making, and keeping your composure on a conference call, is basically running on fumes. So if you’re reading an email three times and still not absorbing it, or you blanked on something you absolutely knew yesterday, please hear this: you are not broken. You are grieving.

Survival strategies that don’t require oversharing

You don’t owe anyone a detailed explanation of your grief at work. You also don’t have to perform being okay when you’re not. Here’s a middle path that actually works:

Give yourself permission to do less, temporarily. Grief is exhausting in a way that sleep cannot fix. If you can scale back non-essential tasks during the early waves, do it. Even one less thing on the list can make a big impact.

Create micro-moments of transition. Before you get on a call, take sixty seconds. Breathe. Put a hand on your chest. Let yourself arrive. Grief has a way of pulling you into the past; these tiny pauses can help you come back to the present, at least for the next hour.

Have a phrase ready. When someone asks how you’re doing and you’re not ready to get into it, it’s okay to have something prepared. “I’m taking it one day at a time” is honest and complete. You said the true thing. You don’t have to say all of it. (I tend to say things like “Doing the best I can today, thank you”)

Cry in the car. Seriously. The car is a sacred grief space. No judgment, great acoustics, windows that fog up for privacy. Use it. If you don’t have a car see if there is a private room somewhere.

What to do with the waves

Grief doesn’t arrive on a schedule (jerk), and it definitely doesn’t read your calendar. A song comes on during your commute and suddenly you’re wrecked before you’ve even logged in. (I write this because it literally just happened to me yesterday on the way to a client) Someone asks if you want to order lunch together and you remember that your person used to do that with you, and now the break room feels impossible.

The waves will come. The goal is not to stop them. The goal is to get a little better at surfing them.

When one hits at work: excuse yourself if you can, name what’s happening internally even if you can’t say it out loud (”I’m having a grief wave, this is okay, it will pass”), and give yourself grace. You are doing something incredibly hard. Getting through a Tuesday while grieving is genuinely a triumph. Let it be one.

A note on asking for support

If you have a manager or coworker you trust, consider telling them, even just a little. You don’t have to map out your entire grief landscape. A simple “I’m going through a loss and some days are harder than others” can open the door for a little more grace to come your way. Most people want to help. They just don’t know what to say, and they’re waiting for a cue.

And if you’re the coworker or manager reading this: check in. Not once. Keep checking in, weeks and months later, when everyone else has moved on and the grieving person is still quietly carrying it. That follow-up matters more than you know. Trust me.

You don’t have to do this alone

The loneliest part of grief at work is the performance of normalcy. Pretending to be fine when you’re not. Eating lunch alone because you can’t explain why today is hard. Closing your office door and hoping nobody notices your eyes are red.

You deserve a space where you don’t have to pretend. Where showing up as you actually are, grieving and real and still figuring it out, is not only acceptable but welcome.

That’s exactly what The Good Grief Society is. A virtual peer support community built for people who are in the thick of it and need somewhere to land that feels human. There’s 24/7 access and twice-monthly live Zoom groups where you can talk, listen, or just exist alongside others who get it.

Because sometimes the most healing thing isn’t having the right words. Sometimes it’s just knowing you’re not the only one crying in a bathroom between meetings.

Join The Good Grief Society here.

Nikki is a death doula, grief coach, and host of the podcast Good Grief with Nikki the Death Doula. She helps people navigate the hard, human stuff that most of the world is still too scared to talk about.

Grief can suck so much time from us. Like Kirby (Old video game character) it just sucks it right up like a vacuum. Days, weeks, maybe even years of our lives just gone to grief.

Read more

You can find me at www.nikkithedeathdoula.com

Want to Join the Good Grief Society?

https://www.nikkithedeathdoula.com/the-good-grief-society

Have a burning question for Nikki the Death Doula? Leave me a message here: https://www.speakpipe.com/msg/s/458190/1/9pa2xynf4iwbj6p1

Support me on Patreon! ⁠https://www.patreon.com/nikkithedeathdoula⁠

Get merch! https://good-grief-podcast.printify.me/

Music: Cherry Monday by Kevin MacLeod - licensing info can be found at filmmusic(dot)io

If you’ve ever cared for someone with dementia and someone with a terminal illness, you already know these two experiences can feel like completely different planets. And if you’re currently in one of them, you might be wondering why no one warned you about the specific flavor of hot garbage you’re living through.

So let’s talk about it.

The grief timeline is completely different

With a terminal illness, there’s usually a diagnosis. Many conversations. And a moment where the road ahead, however devastating, starts to come into focus. You grieve, you plan, you brace yourself. It sucks, but there’s a certain terrible clarity to it.

Dementia doesn’t work that way.

With dementia, the loss is slow and non-linear. There’s no single moment of “this is it.” Instead, you lose them in pieces. Their laugh stays but their memories go. They know your face but not your name. Then one day, they don’t know your face either. Each small disappearance is its own grief, and you’re expected to keep showing up and loving whoever is there that day. (Death by a thousand cuts)

It’s called anticipatory grief in both situations, but with dementia, you can anticipate for years. Sometimes a decade. That’s a long time to hold your breath.

One asks you to let go. The other asks you to keep finding them.

Here’s something caregivers don’t typically say out loud: with a terminal illness, part of the emotional work is slowly releasing the person you love. You’re preparing. You’re making peace. You’re saying the things that need to be said while there’s still time to say them.

With dementia, you never quite get to do that.

You’re not releasing them. You’re chasing them. Trying to connect with whoever showed up today. Celebrating tiny moments of recognition as if they’re sacred (because they are). Grieving the version of them from last month, while still fully present with who they are right now.

Neither is easier. They’re just different kinds of suck.

The caregiver guilt hits differently

Caregiver guilt is universal, I see it in EVERY caregiver I interact with. But how it shows up changes depending on what you’re dealing with.

With a terminal illness, guilt often sounds like: Did I do enough? Did I push hard enough for better care? Should I have noticed sooner?

With dementia, guilt sounds more like: I got frustrated when they asked me the same question for the fifteenth time. I dreaded going over there today. I felt relieved when I finally left. Sometimes it sounds like: I don’t recognize this person anymore and I don’t always know how to love who they’ve become.

That last one is one of the most painful things a caregiver can feel, and one of the least talked about. Loving someone through dementia sometimes means loving a stranger who wears your person’s face. That is genuinely hard, and it does not make you a bad caregiver.

Practical planning looks completely different too

With a terminal illness, there are conversations to be had. Advance directives, hospice decisions, legacy projects, final wishes. Difficult as they are, these conversations are possible. The person you’re caring for can often still participate in their own end-of-life planning.

With dementia, those conversations often happen too late or not at all. Many families find themselves making enormous decisions for someone who can no longer tell them what they want. That weight is significant. It’s one of the biggest reasons I encourage people (all people, while they’re healthy) to get their wishes documented long before they need to be.

No guilt or shade to anyone but this is why I cannot express enough how important it is to have these conversations with your loved ones NOW. Whether you’re 30 or 70, START TALKING ABOUT IT NOW. (I have a death planning workshop coming up later this month where we can get the ball rolling on this!)

What stays the same

Here’s the thing neither experience will let you forget: presence matters. Enormously.

Whether your person knows you’re there or not. Whether they can say thank you or not. Whether the day feels meaningful or just exhausting and repetitive. You showing up is not nothing. It is, in fact, everything.

Both kinds of caregiving will change you. Both will test you in ways you didn’t expect. Both deserve to be talked about honestly, without the pressure to make it look more manageable than it is.

If you’re in either of these seasons right now, I see you. And if no one has said it lately: you’re doing something really hard, and you’re doing it with love.

That counts. Even on the days it doesn’t feel like enough.

I host a peer support group for caregivers on the first and third Thursdays of each month at 7PM EST over zoom. Pajamas and ugly crying are welcome! Please reach out if you want to be added to the invite list.

Ok so that’s…. An interesting fortune. BUT!! This is actually quite clever. Have you thought about your shoes lately?

Read more

Because for many people, safety has not always been a given.

There are individuals who have spent years, sometimes decades, navigating systems that did not fully see them, respect them, or protect them. Medical spaces, in particular, can carry complicated histories. Being misgendered, having relationships dismissed, or feeling the need to explain and defend your identity in vulnerable moments is uncomfortable and deeply exhausting.

So when we talk about end-of-life care in the LGBTQ+ community, we are talking about more than comfort measures and symptom management. We are talking about trust. We are talking about creating spaces where people can show up fully as themselves without bracing for impact.

One of the most important pieces of this is recognition. Chosen family, partners, and support systems must be acknowledged and respected. For many LGBTQ+ individuals, the people who stand closest to them are not always legal relatives. They are friends, partners, and community members who have become family through love and shared experience.

When these relationships are overlooked or dismissed in medical settings, it can create real harm. Important voices are left out of decision-making. The person who knows the patient best may be sidelined. In moments where clarity and connection matter most, that absence can feel sharp.

This is where planning ahead becomes especially powerful. Advance directives, healthcare proxies, and clear documentation of wishes can help ensure that the right people are included and respected. It creates a layer of protection in a system that does not always default to inclusion.

It is also about identity being honored all the way through. Names. Pronouns. Gender expression. These are not small details. They are central to a person’s sense of self. At the end of life, when so much can feel out of control, being addressed correctly and seen clearly can offer a sense of grounding that is hard to put into words. There is a quiet kind of dignity in being known.

Care providers, whether in hospice, palliative care, or private support roles, have an opportunity here. Listening closely. Asking instead of assuming. Creating an environment where a person does not have to decide whether it feels safe to share who they are.

Sometimes this means simple, direct questions:

“What name would you like us to use?”
“Who are the important people in your life?”
“Are there any traditions or parts of your identity that feel important to honor right now?”

These questions open doors. They signal that this is a space where the whole person is welcome.

There are also generational differences worth acknowledging. Older LGBTQ+ adults may carry memories of times when being open about their identity came with serious risk. Some may choose not to disclose, even at the end of life. Others may want to share more openly than they ever have before. Both responses deserve respect.

End-of-life care is not about pushing someone to be more open than they feel safe being. It is about meeting them exactly where they are.

Support can also extend beyond the individual to the people who love them. Grief in the LGBTQ+ community can sometimes be complicated by lack of recognition. A partner may not be acknowledged as such. A chosen family member may feel invisible in spaces where their connection is not understood.

Creating inclusive environments means recognizing grief in all its forms and making space for those relationships to be seen and supported.

There is also room here for advocacy. Death doulas, caregivers, and loved ones can gently speak up when something feels off. Correct a name. Reinforce a relationship. Ask for adjustments when care does not align with the person’s identity.

These moments matter. They help shape an experience that feels more aligned, more respectful, more human. At its core, end-of-life care for the LGBTQ+ community is about the same thing it is for everyone.

Being seen.
Being heard.
Being treated with dignity.

And also, for many, it is about finally being able to exhale in spaces that feel safe enough to hold the fullness of who they are.

If you are supporting someone in this community, your presence matters more than having all the right answers. Your willingness to listen, to learn, and to honor what is shared with you can create a sense of safety that stays long after words fade.

And if this is personal for you, if you are navigating your own care or supporting someone you love, know this:

You deserve care that reflects your life.
Your relationships.
Your identity.

Not as an afterthought.

As a given.

Read more