What No One Tells You About Caring for Someone With Dementia vs. Terminal Illness

Caregiving is caregiving, right? You love someone, they need help, you show up. Simple.  LOLZ.

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.  

End-of-Life Care for the LGBTQ+ Community

End-of-life care is deeply personal for anyone. It asks big questions about identity, dignity, relationships, and what it means to feel safe in your own body and your own story.  And for members of the LGBTQ+ community, those questions often come with an added layer.

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.

Medical Aid in Dying: The Facts, the Myths, and Why It's So Complicated

Yesterday, Ohio lawmakers introduced the Ohio Medical Aid in Dying Act.

As a death doula, I've been waiting for this moment for a long time. And I have feelings about it. A lot of them. So let's talk.

First, what is Medical Aid in Dying?

Medical Aid in Dying (MAID) is not euthanasia. It is not a doctor administering a lethal injection. It is not someone making the decision for a patient.  This is the myth that has stopped this for far too long. 

MAID is the option for a terminally ill adult to request a prescription for medication they can choose to self-administer, on their own terms, at a time of their choosing. The key word there is choose. The patient decides. The patient acts. Nobody does it for them.

The Ohio bill would require two physicians to confirm a terminal diagnosis and that the patient has six months or less to live. Two doctors would have to approve both oral and written requests before a prescription could be filled. There are also built-in criminal penalties for fraud or coercion. This is not a casual process. The safeguards are real and deliberate.

What states already have this?

Washington D.C. and 13 states have already legalized medically assisted dying, and six in ten Americans say they don't morally object to it, according to a 2026 Pew Research analysis. Oregon has had it since 1997. The sky has not fallen. The data from those states consistently shows that the people who use MAID are not the vulnerable or the coerced. They are people who are already dying, who want some measure of control over how.

The myths worth addressing

"This is a slippery slope to euthanasia." The Ohio bill explicitly prohibits euthanasia, mercy killing, and lethal injection. Only terminally ill adults qualify. Disabilities, mental illness, dementia, and serious or chronic conditions would not qualify. The scope is narrow on purpose.

"Doctors will pressure vulnerable people." The opposite tends to be true. Most physicians who support MAID describe it as an extension of patient-centered care. The bill includes criminal penalties specifically for coercion.

"People will choose this instead of treatment." Research from states where MAID is legal shows that the vast majority of people who obtain the prescription never use it. The comfort of having the option is often enough.

Why it's still complicated

Here's where I want to be honest with you, because this topic deserves honesty more than it deserves a tidy conclusion.

MAID brings up enormous questions about suffering, about the role of medicine, about faith, about what a "good death" even means. People I deeply respect land on different sides of this. The opposition is not all bad faith. Some of it comes from a genuine, deeply held belief that life is sacred and that every moment of it matters, even the hard ones. You can disagree with that conclusion and still understand where it comes from.

Ohio's GOP-majority legislature is unlikely to bring the bill to a vote, so this conversation may be more symbolic than immediate. But symbolic conversations matter. They move the needle. They make space for people to think about what they actually believe before they're the one in the hospital bed.

Why I'm talking about this today

Because this is exactly the kind of conversation most people avoid until they can't anymore. Because I've sat with people who were terrified of how they would die, not of dying itself, but of the loss of control, the suffering, the indignity. Because I've also talked to people of deep faith who found meaning in every remaining moment, even the painful ones, and wouldn't have chosen differently.

Both of those are true. Both of those are human.

I had the privilege of talking with Lisa Vigil Schattinger, Executive Director of Ohio End of Life Options, on the podcast a while back. (If you haven't listened, here it is) She has dedicated her life to this issue and she is one of the clearest, most compassionate voices in the room.

This conversation is happening in Ohio now. I think we should be part of it.

The Healing Power of Storytelling at the End of Life

Something shifts when a person knows their time may be limited.  The small talk feels less important. The surface-level conversations lose their appeal. And what often rises in its place is something deeper, more honest, sometimes surprisingly tender.

Stories.

I don’t mean polished, highlight-reel versions or book-worthy epics. The real ones. The ones with texture. The ones that hold joy and regret in the same breath. The ones that start with “I’ve never told anyone this before…”

At the end of life, storytelling becomes less about entertainment and more about meaning. It is a way of gathering the scattered pieces of a life and holding them up to the light. Not to judge them, but to witness them.  And there is something deeply healing about being witnessed.

For the person who is dying, telling their story can feel like putting things back into order. Memories that once felt random begin to connect. Moments that seemed small take on new significance. Even painful experiences can soften a little when spoken out loud, when someone is there to listen without rushing, without fixing, without turning away.

There is often a rather important question underneath it all:
Did my life matter?

Storytelling becomes one way of answering that question.  It says, “This happened. I was here. This is what I loved. This is what I carried. This is who I was.”  And that matters more than most people realize.

For families and loved ones, these stories become something to hold onto long after the person is gone. Not just facts or timelines, but essence. The way they laughed when they told a certain story. The way their eyes softened when they talked about someone they loved. The pauses, the emotions, the little details that never made it into photo albums or social media posts.

These are the things people return to in grief.

Sometimes storytelling at the end of life looks intentional. A recorded conversation. A collection of letters. A guided life review where someone is gently invited to reflect on different seasons of their life.  Sometimes it is far less structured.

It happens in the quiet hours, sitting at the bedside. In the middle of the night when sleep will not come. In between medication schedules and visits from nurses. A memory surfaces, and someone follows it. Another memory follows that one. Before you know it, hours have passed and something meaningful has unfolded without anyone planning it.

Storytelling is not just about the past. It is also about connection in the present. It creates moments where the person who is dying is not defined by their illness. They are a whole human being, full of experiences, relationships, and memories that deserve space.

It can also open doors that have been closed for a long time.

A story can lead to an apology that never found its words.  It can lead to forgiveness, or at least a softening.  It can lead to laughter in a room that has felt heavy for days.  And sometimes, it simply leads to peace.

The kind of peace that says, “This is my life, as it was. And I can sit with that.”

For caregivers and loved ones, there can be a quiet pressure to say the right thing, to ask the right questions, to somehow make this time meaningful.  And you do not have to be a perfect interviewer!!  Start simple.

“Tell me about when you were younger.”
“What was your favorite place?”
“Who changed your life?”
“What are you most proud of?”

And then….here’s the fun part….. just listen.

No need to steer the conversation. No need to turn it into something profound. The meaning has a way of finding its way out.

The stories may be messy or incomplete. Memories can blur, and details can get mixed up. That’s okay!  It is about giving someone the space to say, “This is what it felt like to be me.”

If you are walking alongside someone at the end of life, consider this an invitation.  Don’t force storytelling, but to make room for it.  Put down the mental checklist for a moment. Sit a little longer. Ask a question you have never asked before. Let silence do some of the work.  You might be surprised by what emerges!

And if you are the one nearing the end of your life, or even just reflecting on it from where you are now, your stories are worth telling. And don’t wait for them to be perfectly organized.  (They never will be!)

In the end, stories are one of the ways we remain, long after the room is quiet.  Long after the moment has passed.  They carry pieces of us forward, held in the hearts of the people who listened.

How Death Doulas Differ from Hospice and Palliative Care

I get this question a lot so I figured I’d expand on it a bit.

When someone receives a serious or life-limiting diagnosis, a whole new language tends to enter the room. Words like “palliative care,” and “hospice,” start floating around, often used interchangeably. It can feel confusing, especially when you are already overwhelmed and trying to make thoughtful decisions for yourself or someone you love.

These services can overlap in beautiful ways, but they are not the same. Understanding the differences can help you build the kind of support system that actually meets your needs, not just medically, but emotionally and practically too.

Let’s start with palliative care.

Palliative care focuses on improving quality of life at any stage of a serious illness. It can begin at diagnosis and exist alongside curative treatment. A palliative care team usually includes doctors, nurses, and specialists who work together to manage symptoms like pain, nausea, fatigue, and anxiety. They are there to help you feel as comfortable and supported as possible while you continue treatment.

Hospice care enters the picture later, typically when curative treatment is no longer being pursued and the focus shifts fully to comfort. Hospice teams provide medical care, pain management, and emotional support, often in the home. They also support family members, offering guidance and resources during an incredibly tender time. Hospice is structured, regulated, and usually covered by insurance when eligibility criteria are met.

Now, where do death doulas fit into all of this?

A death doula is a non-medical support person who walks alongside individuals and families through the entire process. Think of it as a deeply human layer of care that complements what hospice and palliative teams provide.

Death doulas are not there to replace medical professionals. They do not administer medication or make clinical decisions. Instead, they focus on presence, planning, education, and emotional support in ways that are often more flexible and personalized.

This can look like helping someone create a legacy project, writing letters, recording stories, or planning meaningful rituals. It can look like guiding a family through conversations they have been avoiding because they do not know how to start. And also sitting at the bedside and holding space during long, quiet hours.

Sometimes it is more practical. A death doula might help organize paperwork, talk through end-of-life wishes, or explain what the dying process can look like in a way that feels less clinical and more grounded. They can also support caregivers who are exhausted and unsure if they are doing things “right.”

One of the biggest differences is time and continuity. Hospice nurses and aides often have full caseloads and limited visit times. They provide essential care, but they cannot always stay for hours or be available on short notice for emotional support. A death doula can offer more consistent presence, whether that means longer visits, being on call, or simply being someone you can text when questions come up at 2 a.m.

There is also a difference in how support is shaped. Hospice and palliative care follow medical guidelines and organizational structures. Death doulas tend to work more fluidly, adapting to the unique values, beliefs, and rhythms of the person and family they are supporting. The care can be as spiritual, practical, quiet, or creative as the situation calls for.

Another important distinction is access. Hospice is typically covered by insurance, while death doulas are usually paid out of pocket. This can influence how and when people bring a doula into their care team. Some families choose to involve a doula early for planning and emotional support, while others reach out closer to the end when they realize they need more hands and heart in the room.

What matters most is that these roles are not in competition. In many cases, they work beautifully together.

A hospice nurse may manage pain and monitor physical changes. A death doula may sit with the family afterward, helping them process what they just witnessed. A palliative care team may adjust medications to ease symptoms. A death doula may help translate that experience into something the family can emotionally understand and integrate.

It becomes a kind of layered care, where each role supports a different part of the experience.

And at the center of it all is a person who is dying, along with the people who love them, trying to find steadiness in a time that rarely feels steady.

If you are navigating this space, you are allowed to ask questions. You are allowed to build a support system that feels right to you. Medical care matters deeply, and so does having someone who can sit with you in the quiet, the fear, the meaning-making, and the in-between moments that do not fit neatly into a chart.

There is no one right way to do this.

There is only the way that helps you feel a little more supported, a little more informed, and a little less alone as you walk through it.

Is This Grief or Am I Just Losing My Mind? (Spoiler: It’s Both)

I need to write this out because I am living this myself right the #%# now.

At some point in grief, almost everyone has the same unsettling thought:

Am I okay? Like… actually okay?

Because suddenly, you’re doing and thinking things that don’t feel like you. You walk into a room and forget why you’re there. You reread the same sentence five times and still have no idea what it says. You cry at a commercial about laundry detergent. Or worse, you don’t cry at all, and that somehow feels even more alarming.

You might even find yourself Googling symptoms at 2 a.m., half-convinced you’ve developed a neurological condition overnight.

Let me save you a little time (and a lot of late-night chat gpt conversations):  You’re not crazy.  And you’re not sick.  (Well I won’t confirm that one, I’m not a doctor)  But grief does make it feel like you are.

So….it’s both.

Grief isn’t just emotional. It’s neurological, physical, cognitive and spiritual.  Sometimes all at once. It’s like your entire internal operating system was removed, shaken up, and reinstalled without a user manual. Of course things feel glitchy.  (Sorry my IT background comes out now and then)

Your brain is literally trying to process a reality it doesn’t want to accept. The person you lost still exists in your memory, your habits, your muscle memory. You might still reach for your phone to text them. You might expect to hear their voice in the next room. And then….you remember.

Again.And again.And again.

That repeated remembering? It’s exhausting. It’s disorienting. It’s why you feel foggy, forgetful, and sometimes completely untethered from yourself.  (HI I’M  LITERALLY LIVING THIS RIGHT NOW AND IT SUCKS SO HARD)

And then there are the emotional whiplashes.  (Nikki.  Please make this stop)

One minute you’re fine, answering emails, making dinner, maybe even laughing at something dumb. The next minute, you’re hit with a wave so strong it feels like it came out of nowhere. Your chest tightens, your throat closes, and suddenly you’re crying in the car, gripping the steering wheel like it’s the only solid thing left in the world.

It can make you question your stability.  Shouldn’t I be more consistent than this?  Nope!

Grief doesn’t do consistency. Grief does unpredictability. It shows up uninvited, ignores your schedule, and has absolutely no respect for your plans to “pull it together.”  (jerk)

And let’s talk about the intrusive thoughts for a second.  The “what ifs,” the “if onlys,” the mental replays of things you said or didn’t say. These loops can feel obsessive, like your brain is stuck on repeat and you can’t find the off switch.  That’s your mind trying (and failing) to make sense of something that doesn’t make sense.  Grief asks questions that don’t have answers. And your brain, being the overachiever that it is, keeps trying anyway.

Then there’s the identity piece. The subtle but profound feeling that you don’t quite recognize yourself anymore. The things that used to matter don’t hit the same. The version of you that existed before this loss feels… distant. Almost like someone you used to know.  And that can be one of the scariest parts.

Because it’s not just them that’s gone, it’s the version of you that existed with them.

So if you’re sitting there wondering whether you’re unraveling, here’s the honest answer:  You’re reconfiguring.  (Or defragging for my fellow IT nerds)  And yeah, it’s messy as hell.

Grief strips things down to the bones. It shakes loose your assumptions about life, about control, about what’s fair and what’s not. It forces you to carry something you never asked for, and it doesn’t give you a clear map for how to do it.

Of course you feel disoriented.Of course your thoughts feel scattered.Of course your emotions feel bigger, weirder, harder to contain.

That doesn’t mean you’re losing your mind, it means your mind is trying to hold something enormous.

Reality check: while grief can absolutely mimic anxiety, depression, and even symptoms that feel like you’re “going crazy,” there are times when extra support is needed. If your thoughts feel unsafe, if you’re completely unable to function, or if the fog never lifts even a little, please reach out. You don’t have to muscle through this alone.

For most of us, this strange, surreal, “what is happening to me” feeling is a very normal part of a very human response to loss.

So the next time your brain feels like scrambled eggs and your emotions are doing gymnastics, try this instead of panicking:

Pause.Breathe.This is grief.

Not a personal failure, not a sign you’re broken, not proof you’re losing it.  Just grief, doing what grief does best: Turning your world upside down… while quietly, slowly asking you to learn how to live in it again.

And hey, if you want to be in a group with others that get it, come join us over in the Good Grief Society!

Before the End: 7 Things I Wish Everyone Knew Before They Die

Working with people at the end of life gives you a strange kind of clarity.

When someone knows their time is limited, the noise of everyday life falls away. The things we obsess over; emails, messy kitchens, awkward conversations, whether we said the wrong thing at a meeting, suddenly feel… well….silly.

What rises to the surface instead are the things that were always important but easy to ignore when life felt endless.

As a death doula, I’ve had the privilege of sitting with people in those final chapters. I’ve listened to their reflections, their regrets, their gratitude, and the quiet wisdom that often arrives when the clock gets louder.

And over time, some patterns show up again and again.

Here are a few things I wish more people understood long before they reach the end of their lives.

1. You Don’t Have As Much Time As You Think

“It all goes so fast!”  It’s cliche’ but omg is it true.  I don’t mean this to scare you.  Just to really clarify my point.

Most of us move through life assuming we have decades to sort things out, repair relationships, take the trip, change careers, or finally start doing the thing we keep putting off.  But the truth is, time is unpredictable.  Ask my brother who died at 40.  Or mom who died literally writing her to-do list for that day.

When people reach the end of life, one of the most common realizations is how quickly it all moved.

The good news? You don’t need to panic about time.

You just need to stop assuming there’s always more of it.

2. The Little Moments Were Actually the Big Ones

People rarely talk about promotions or fancy purchases when they’re nearing the end.  They talk about ordinary moments that turned out to be extraordinary:

Saturday mornings making pancakes with their kids.
Laughing with friends until their stomach hurt.
Quiet evenings on the couch with someone they loved.

The things that seemed small at the time often become the memories people hold onto most tightly.

Life’s meaning tends to hide in very ordinary places.

3. Most of the Things You Worry About Don’t Matter

So many people spend years worrying about things that, in hindsight, barely register.

What other people thought of them.
Whether they looked successful enough.
Whether they were doing life “the right way.”

Near the end, those worries lose their grip.

People often realize they spent a lot of energy managing perceptions instead of simply living.

Turns out, the scoreboard we imagine everyone else is keeping… DOESN’T EXIST!.

4. Relationships Matter More Than Achievements

Careers, accomplishments, and goals absolutely matter. They give life purpose and structure.  But when people look back on their lives, what carries the most emotional weight are the relationships.

Who loved them.
Who they loved.
Who showed up when things got hard.

The end of life tends to highlight a simple truth: connection is the real currency of being human.  Oh, I like that.  Let me say it again, louder for the people in the back.  CONNECTION IS THE REAL CURRENCY OF BEING HUMAN.

Investing in relationships almost always pays off way bigger than a Roth IRA

5. It’s Never Too Late to Say the Important Things

One of the most powerful parts of being around the dying is witnessing the conversations that finally happen.

Apologies.
Forgiveness.
“I love you.”
“I’m proud of you.”
“Thank you for being in my life.”

Many of these words were sitting quietly in people’s hearts for years.

The beautiful thing is that even near the end, speaking them out loud can bring enormous peace, to both sides of the conversation.

But if we’re honest, most of these things don’t actually need to wait until the end.

6. Your Life Doesn’t Have to Be Perfect to Be Meaningful

A lot of people carry the belief that they were supposed to do life better somehow.

Be more successful.
Be a better parent.
Make fewer mistakes.

But when people start reflecting on their whole life story, something softer often emerges.

They begin to see the courage it took to keep going.  The ways they helped people without realizing it.  The love that existed even inside messy, imperfect moments.

Meaning is found in a life that was fully lived, fully felt, and deeply human.

7. Being Here Was the Gift All Along

One of the quiet themes that appears at the end of life is gratitude for the simple fact of having existed.

For sunsets, music, and the feeling of laughing so hard you can’t breathe. For falling in love, raising children and simply watching seasons change again and again.

Even people who lived very difficult lives often find moments of wonder when reflecting on the fact that they got to experience this strange, beautiful thing called being alive.  And that realization can bring a surprising sense of peace.

A Gentle Reminder for the Living

You don’t have to wait until the end of life to learn these things.

You can call the person you’ve been meaning to call.

You can forgive someone (including yourself).

You can notice the small moments that are happening today instead of rushing past them.

And you can stop waiting for some imaginary “someday” version of life to begin.

Because if the people I’ve sat beside at the end have taught me anything, it’s this:

Life isn’t something that starts later.

It’s already happening.

When Words Fail: 5 Powerful Ways to Be Present When You Don’t Know What to Say

There’s a moment that happens when someone you love is hurting.

You want to say something helpful. Something comforting. Something wise and beautiful that makes it all feel a little less awful.  And instead… your brain goes completely blank.

So you panic a little and say something like, “Let me know if you need anything,” or “Everything happens for a reason,” and immediately wish you could rewind time like it’s a bad voicemail recording.

Here’s the truth most people don’t realize:
When someone is grieving or struggling, the right words matter far less than your presence.

You don’t need a perfect speech. You don’t need to solve their pain. You just need to show up in a real, human way.

If you’ve ever thought, “I want to be there for them, but I don’t know what to say,” you’re already halfway there.

Here are five ways to be deeply present when words feel inadequate.

1. Say the Honest Thing

When we’re uncomfortable, we often reach for clichés because silence feels awkward. But honesty is far more comforting than a rehearsed line.

Simple phrases like:

• “I don’t know what to say, but I care about you.”

• “I’m really sorry you’re going through this.”

• “This just really sucks.” (My personal fave)

These words may feel small, but they carry something powerful: authenticity.

People in pain can sense when someone is trying to fix or tidy up their grief. Honest acknowledgment says, “I see that this is hard, and I’m not going to pretend it isn’t.”

And sometimes that’s the most comforting thing you can offer.

2. Let Silence Do Some of the Work

Silence gets a bad reputation.

We’ve been trained to think every pause needs to be filled, every emotion needs commentary, and every tear requires a speech.

But silence, when shared with someone who cares, can be incredibly supportive.

You can sit together.
Walk together.
Hold a hand.
Pass the tissues without saying a word.

Those quiet moments tell someone, “You don’t have to perform for me. You don’t have to rush through this. I’m staying right here.”

And that kind of presence is rare.

3. Listen Like You Mean It

Most of us listen with one ear while the other ear is busy preparing our next response.

But when someone is hurting, what they often need most is to be heard without interruption, correction, or advice.  (NO ONE LIKES ADVICE THEY DIDN’T ASK FOR!)

You can say things like:

• “Tell me more about that.”

• “What’s been the hardest part?”

• “I’m here. Keep going.”

You don’t have to analyze their feelings or steer the conversation somewhere more comfortable. Just let them talk.

Grief, fear, anger, confusion are big emotions that need space. And when someone offers that space, it’s incredibly healing.

Think of it less like fixing and more like holding the container for whatever shows up.

4. Do Something Small and Practical

When someone’s world has been turned upside down, everyday tasks can suddenly feel enormous.

This is where practical support becomes gold.

Instead of vague offers like “Let me know if you need anything,” try something concrete:

• Drop off a meal

• Walk the dog

• Run an errand

• Send a quick check-in text

• Sit with them during a hard appointment

These gestures say, “You don’t have to carry everything alone today.”

And the beautiful thing about practical support is that it removes pressure. The person receiving it doesn’t have to ask, organize, or explain.

You just quietly help carry a little of the weight.

5. Keep Showing Up (Even After the Crisis)

One of the hardest parts of grief or hardship is what happens after the initial wave of support fades.  People check in right after the loss. Meals arrive. Messages pour in.  Then life moves on.

But the grief? It sticks around.  One of the most meaningful things you can do is keep showing up long after everyone else has returned to normal life.

Send a message weeks later.  Remember important dates.  Ask how they’re doing months down the road.

Grief doesn’t follow a tidy timeline, and presence shouldn’t either.

Sometimes the greatest gift you can give someone is simply proving that their pain hasn’t been forgotten.

The Real Secret to Showing Up

If you take nothing else away from this, remember this one thing:

You don’t have to say the perfect thing to be the right person in the room.

You just have to be willing to stay.

Stay when it’s awkward.
Stay when emotions get messy.
Stay when there’s nothing wise or poetic to offer.

Because real, imperfect presence is far more powerful than perfectly chosen words.  And chances are, the person hurting won’t remember the exact sentence you said anyway.

They’ll remember that you showed up… and didn’t disappear when things got hard.

Caregiver Guilt Is Normal: Why Feeling Like You’re Doing It Wrong Might Mean You’re Doing It Right

If you’re caring for someone who is dying or seriously ill, there’s a good chance you’ve had this thought at least once a day:

I’m doing this wrong.

Maybe it shows up when you lose your patience.
Or when you Google symptoms at 2 a.m. and convince yourself you missed something important.
Or when someone asks, “How are things going?” and your brain immediately replies, Terribly. I have no idea what I’m doing.

Welcome to caregiving.

Here’s the truth no one says: most caregivers feel like they’re doing it wrong. And strangely enough, that feeling is often a sign you’re doing it exactly right.

Let me explain.

Caregiving Doesn’t Come With a Manual

Most caregivers are thrown into the role without training. One day you’re a daughter, partner, friend, or spouse… and suddenly you’re also a medication manager, appointment scheduler, emotional support human, medical translator, and part-time detective trying to interpret symptoms.

It’s a lot.

And because the stakes feel incredibly high (this is someone you love, after all) every decision can feel loaded with pressure.

Did I give the medication at the right time?
Should I have pushed harder at that doctor’s appointment?
Am I being patient enough?
Am I missing something?

Your brain is scanning for mistakes because you care deeply about the outcome.  Does that sound like failure?  I hope not!

Doubt Is Often a Sign of Deep Care

People who truly don’t care rarely question themselves.

The caregivers who lie awake worrying they’re doing it wrong are usually the ones who are showing up day after day despite exhaustion, uncertainty, and grief that started long before the death itself.

You’re learning as you go. You’re adapting to changes you didn’t ask for. You’re making decisions in situations where there are rarely clear “right” answers. Of course you feel unsure!

The Myth of the Perfect Caregiver

Somewhere along the way, many caregivers absorb this invisible expectation that they should be endlessly patient, emotionally steady, medically knowledgeable, and available 24/7.

Let’s be honest: that person does not exist.

Real caregivers:

• Get frustrated

• Forget things occasionally

• Need breaks

• Feel resentful sometimes

• Cry in the car

• Laugh at inappropriate moments

• And occasionally hide in the pantry just to breathe for five minutes

None of that means you’re failing. It means you’re human.

The goal was never perfection. 

What Your Loved One Actually Needs

When people imagine “doing caregiving right,” they often picture flawless care. Perfect timing, perfect words, perfect emotional responses.

But most people who are seriously ill aren’t looking for perfection.

They’re looking for:

• Someone who shows up

• Someone who tries

• Someone who stays

They need someone willing to sit in uncertainty with them.

And that’s exactly what caregivers do every day.

You might feel clumsy in the role. You might second-guess yourself constantly. But if you keep showing up with care and compassion, you’re already giving something incredibly meaningful.

The Quiet Reality of Caregiving

Caregiving is a strange mix of love, logistics, grief, and improvisation.

Some days you feel strong.
Some days you feel like a walking to-do list with a pulse.
Some days you feel like you’re barely holding things together with duct tape and caffeine.

That’s normal.

No one but you will care whether you handled every moment perfectly. You’re there, navigating something incredibly hard alongside someone you love.

If You’re Worried You’re Doing It Wrong…

Let me offer you this gentle reframe:

If you’re questioning yourself, it probably means you care deeply about getting it right.

And caring that much? That’s the heart of caregiving.

So if today you feel unsure… overwhelmed… or like you’re fumbling through the role…

Take a breath.

You’re showing up.
You’re trying.
You’re loving someone through one of the hardest chapters of life.

That counts more than you realize.

And odds are, you’re doing a whole lot more right than you think.

The In-Between Season of Grief

March has a strange personality.

One day the sun feels warm on your face and you think, maybe we’re turning a corner. The next day you’re scraping ice off your windshield again, wondering who you trusted enough to put the snow boots away.  It’s not winter anymore. But it’s not spring either.

Grief has a season like that too.

In the beginning, everything is very…..loud. The shock. The phone calls. The casseroles. The way time feels warped and unreal. There is structure in those early days. There are rituals to follow. There is permission to fall apart in public.  People expect you to be a mess. And you are.

But then the calendar keeps moving.

The meals stop arriving. The sympathy cards taper off. The world gently, then not so gently, returns to normal. You go back to work. You answer emails. You attend appointments. You figure out how to function.  And somewhere in that process, you enter the in-between season of grief.

You’re no longer in the acute stage. You are not in crisis every minute. You might even laugh again. You can carry on a conversation without your voice cracking. You can get through a whole afternoon without crying.  But you are not fine.

The pain has changed shape. It is less sharp, but more woven into your everyday life. It shows up in ordinary moments. In the grocery store when you reach for their favorite brand. In the quiet at night when there is no one to debrief your day with. In the sudden realization that you are becoming someone new, and you did not ask for this transformation.

This middle space can be deeply confusing.  You may look “better” from the outside. You are functioning. You are productive. You are handling things. People tell you how strong you are.

What they do not see is the low, steady ache beneath the surface. The background hum of missing. The mental math of firsts and anniversaries quietly approaching. The effort it takes to move through a world that feels both the same and completely altered.

This in-between season is often lonelier than the beginning.

In the early days, support surrounds you. Later, the assumption creeps in that you have processed it. That you are on the other side. That grief is something you move through quickly and neatly.  But grief does not follow a tidy timeline. It does not respond to pressure. It does not pack up because other people are uncomfortable.  This middle phase is where the deeper integration begins.

It is where you start asking harder questions. Who am I now? What does my life look like without them physically here? How do I carry this love forward?  It is also where guilt can sneak in. Guilt for laughing. Guilt for having a good day. Guilt for feeling relief if the caregiving was long and exhausting. Guilt for still hurting months or years later.

Let me say this clearly: THIS IS NORMAL AND YOU ARE OK.

You are not grieving too long. You are not weak for still having waves of sadness. You are not dramatic because a change in seasons hits you harder than you expected.  You are adjusting to a reality that altered you, and that takes time.

The in-between season of grief is not about “getting over” the loss. It is about learning how to live alongside it. It is about discovering that you can hold sorrow in one hand and a decent Tuesday in the other. That you can feel gratitude and longing in the same breath.  This is not betrayal. It is not forgetting.  It is growth that does not erase love.

March eventually gives way to spring, not because we forced it, but because seasons move at their own pace. The ground softens slowly. The light stretches a little further each evening. You do not notice the shift all at once. You notice it in inches.

Grief moves like that too.

If you find yourself in this middle ground, be gentle with yourself. Lower expectations where you can. Tell the truth about how you are actually doing, at least to one safe person. Let yourself be both functioning and fragile.  You do not have to rush this season and you do not have to navigate it alone.

This is exactly why I created the Good Grief Society. It is a space for people who are past the casseroles but still very much in it. A place where you do not have to explain why it still hurts. A place where the messy middle is understood, not fixed.  If you are in the in-between, you are welcome there.

You are not behind.

You are in a season.

And seasons change, even when they take their sweet time.

Top 5 Ways Grief Changes You and Why That’s Not a Failure

Grief has a way of rearranging the furniture of your life without asking permission. One day you recognize yourself. The next day you’ve tripped over the coffee table for the 3rd time wondering when this all got so damn HEAVY.

People often tell me that they just want to “get back to who I was before.” I understand that longing. But grief is not a detour you circle around and exit unchanged. It marks you. And being marked by love and loss is not a personal shortcoming. It is evidence that something mattered.

Here are five ways grief changes you, and why those changes are not signs you are doing it wrong.

1. Your energy shifts

You may feel bone-deep exhaustion, even months later. Tasks that once took an hour now take an afternoon. Decisions feel harder. Socializing can feel like hiking in flip-flops.  (Dude seriously, I’ve seen people do this.  Please no)

This does not mean you have become lazy or unmotivated. Grief consumes energy because your nervous system is working overtime underneath it all. You are adjusting to a world that no longer includes someone you love. Your body and brain are recalibrating. That takes fuel.

When your capacity changes, it is not a character flaw. It is your system asking for care. Think of it as healing work happening beneath the surface. You cannot see it, but it is real.

2. Your priorities rearrange themselves

After a significant loss, what once felt urgent may lose its shine. Career goals, social obligations, even long-held plans can feel less compelling. At the same time, smaller moments may suddenly feel sacred. A quiet morning. A real conversation. Time with the people who remain.

This shift can be disorienting. You may question your ambition or wonder why you no longer care about things that used to drive you. Grief often clarifies what truly matters. When death enters the room, illusions tend to leave.

Letting your priorities evolve is not drifting. It is growth under pressure. You are living with a deeper awareness of time and fragility. That perspective can reshape everything.

3. Your relationships change

Some people show up in ways that surprise you. Others disappear. Conversations can feel strained. You might find yourself less tolerant of surface-level interactions and more drawn to honesty.

This can be painful. It can also be clarifying. Loss tends to reveal who can sit in discomfort and who needs to rush you toward “better.” As your inner world changes, your relational world may shift too.

Outgrowing certain dynamics does not make you ungrateful. Wanting deeper connection does not make you demanding. Grief often teaches you to value authenticity. That lesson can refine your circle.

4. Your emotional landscape becomes more intense

You may cry at commercials. Or feel sudden waves of anger. Or experience joy that is sharper and more bittersweet than before. Grief can heighten everything. It cracks you open.

Some people worry that they are too emotional now. That they have become fragile. In truth, you are more aware. When you have loved deeply and lost deeply, your emotional range expands.

There is courage in staying open. It would be easier to numb out. Remaining connected to your feelings, even the messy ones, is a sign of resilience. Your heart has stretched. Stretched hearts feel more.

5. Your identity evolves

Perhaps you now carry a new title. Widow. Bereaved parent. Adult child without parents. Or maybe the change is quieter. You feel older somehow. More reflective. Less certain about simple answers.

You might not fully recognize the person you are becoming. That can be unsettling. We like continuity. We like the illusion that we stay the same.

Grief disrupts that illusion. It asks you to integrate love, loss, memory, and meaning into your sense of self. Over time, you may notice new strengths. Greater empathy. A deeper ability to sit with others in pain. A clearer understanding of what you stand for.

Becoming someone new in the aftermath of loss is not betrayal of who you were. It is an adaptation to reality. You are still you. Just with more layers.

If you are in the thick of grief, you might worry that you are handling it poorly because you feel different. Because your capacity has shifted. Because your worldview has changed.

Change is the natural companion of loss. You cannot lose something that mattered and remain untouched. The goal is not to preserve your old self in a glass case. The goal is to learn how to carry your love forward in a changed body, a changed mind, a changed life.

Grief will alter you. It may soften you in some places and strengthen you in others. It may slow you down. It may sharpen your clarity. None of that is failure.

It is the human response to loving deeply in a world where goodbye is part of the deal.

And if you are changing, it means you cared. That is something to honor, not hide.

If you need a soft place to land and be supported in your grief, come join us at the Good Grief Society!

Things Grief Took From Me and What It Gave Me Instead

Things Grief Took From Me and What It Gave Me Instead

Grief is a thief.  (I love a good rhyme)
It does not ask permission to come in.  It shows up, rearranges your life, and leaves you standing there holding pieces you do not recognize.

People talk a lot about what grief teaches us, how it makes us stronger or wiser. That might be true eventually. But first, grief takes. Quietly, aggressively, and without apology.

Here are some of the things grief took from me. And, over time, what it gave me instead.

It took my sense of safety

Before grief, I believed in a certain order to life. If you did the right things, loved the right way, planned carefully enough, you would be mostly protected.

Grief shattered that illusion. It taught me that life can change in a single phone call.  (A phone call forever etched in my brain) That control is mostly a story we tell ourselves to sleep at night.

What grief gave me instead was presence. I stopped postponing joy and connection. I learned to say the thing, take the trip, hold the hand longer. When you stop assuming tomorrow is guaranteed, today gets louder and more precious.

It took my old identity

Grief does not just take people. It takes versions of you.

I was no longer who I was before the loss. I could not go back, no matter how badly I wanted to. The world kept asking me to be my old self, while grief quietly erased that blueprint.

What it gave me instead was permission to become someone new. Someone softer in some places and sharper in others. Someone who no longer apologizes for being changed by loss. Reinvention was not a choice. It was survival.

It took my tolerance for nonsense

Small talk became unbearable. Performative busyness lost its appeal. I no longer had the patience for things that drained me just to keep the peace.

Grief stripped away the illusion that everything deserves my energy.

What it gave me instead was clarity. I learned where my yes truly lives and how sacred my no can be. I stopped explaining myself so much. Life is too short to spend it pretending.

It took my relationship with time

Grief warped time in strange ways. Days dragged. Months disappeared. Anniversaries felt both far away and impossibly close.

I stopped trusting the calendar to tell the truth about how I was doing.

What grief gave me instead was rhythm instead of deadlines. I learned that healing is not linear and cannot be scheduled. Some days are heavy for no obvious reason. Others are light and surprising. Both are allowed.

It took my illusions about strength

I thought strength meant holding it together. Being composed. Not falling apart.

Grief laughed at that idea.

It dropped me to my knees. It made me sob in grocery stores and forget words mid sentence. It humbled me in ways I never anticipated.

What it gave me instead was a deeper, quieter strength. The kind that lets you ask for help. The kind that sits with pain without rushing to fix it. The kind that survives.

It took some relationships

Not everyone stayed. Some people disappeared when grief got uncomfortable. Others expected me to grieve on a timeline that felt polite and tidy.

That loss hurt almost as much as the original one.

What grief gave me instead was discernment. I learned who could hold my truth and who could not. I found deeper connections with people who understood that grief is not something you get over, but something you learn to carry.

It took my innocence about pain

I will never again be naive about how deeply loss can cut.

That part of me is gone.

But what grief gave me instead was compassion. Real compassion. Not the kind that rushes in with platitudes, but the kind that sits quietly beside suffering. The kind that does not flinch when things get messy.

Grief took a lot from me. I will never pretend otherwise.

But it also gave me depth, honesty, and a fierce tenderness for what matters. It changed the way I love, the way I listen, and the way I show up in the world.

I would never choose grief.
But I honor who I became because of it.

What to Expect During the Dying Process: What Families Wish They’d Known

We plan funerals. We argue about paperwork. We Google symptoms at 2 a.m. But the day to day reality of the dying process often arrives with zero warning and a whole lot of what the hell is happening.

No one really talks about what dying actually looks like until you are already in it.

After walking alongside many families at the end of life, I’ve seen many different dying experiences but almost all of them end with someone saying, “I did not expect….”  Because it’s not like the movies.  And since we never talk about death and dying, we don’t often share our experiences with anyone else so we don’t know what to expect!

So let’s just get it out there, shall we?  Here are some of the things I’ve heard people tell me they wish they’d known.

1. Dying is usually slower than you expect

Movies make it look dramatic and sudden. Real life tends to be quieter and much longer.

People are often shocked by how much waiting there is. Days blur together. There are long stretches where nothing seems to change, followed by moments where everything shifts at once. That slowness can feel excruciating when you are emotionally exhausted and desperate for clarity.

Knowing this ahead of time does not make it easy, but it can keep you from constantly thinking you are missing something or doing something wrong.

2. Appetite changes are normal and not a personal rejection

One of the most painful moments for caregivers is when food stops being welcomed.

The dying body gradually needs less fuel. Hunger fades. Swallowing becomes difficult. Favorite foods suddenly taste wrong or are refused altogether. Families often panic or feel hurt, especially if feeding has always been a way of showing love.

This is not your loved one giving up or pushing you away. It is the body doing exactly what it is designed to do at the end of life. Offering food gently and without pressure is usually far more loving than insisting they eat.

(Check out this widely known book on the matter)

3. Sleep increases and it can feel like you are losing them early

People nearing the end of life often sleep more. Sometimes much more.

They may drift in and out of consciousness. Conversations become shorter. Eye contact fades. Families often worry that their loved one is withdrawing or that they have already missed their chance to connect.

Even when someone appears asleep, hearing is often one of the last senses to go. Talking, reading, holding a hand, or simply being present still matters. Love does not require a response to be real.

4. The body does strange things that are normal and unsettling

There are physical changes that no one prepares you for.

Breathing patterns change. Skin color shifts. Hands and feet cool. Sounds may come from the chest that are scary if you do not know what they are. None of this necessarily means pain.

Most of these changes are part of the natural shutting down process. Hospice and palliative teams see them every day. Asking questions is not bothersome. It is responsible caregiving.

5. Emotional and spiritual moments can be surprising

Some people talk to people who are not physically present. Some reach for something unseen. Some say things that feel symbolic or out of character.

This can be deeply comforting or deeply confusing, depending on your beliefs and expectations. Many families wish they had known that these moments are common and not signs of distress or confusion that need fixing.

Often, the best response is simply to listen and stay grounded.

6. You can do everything right and still feel like it is not enough

This is the one that hits hardest.

Caregivers often replay every decision after the death. Did I say the right thing? Did I stay too long or not long enough? Should I have pushed for something different?

There is no perfect script for dying. Being present, imperfect, tired, loving, and human is already enough. Guilt loves hindsight, but hindsight is not wisdom. It is just pain looking for meaning.

7. The end does not always look how you imagined

Some deaths are peaceful. Some are messy. Some are quiet. Some are loud with emotion.

Families often expect a final profound moment with clear closure. Sometimes that happens. Sometimes the end is subtle and anticlimactic. Both are normal. Neither means you did anything wrong or missed something sacred.

8. You are allowed to need support too

Many people believe caregiving means being strong at all costs.

In reality, the dying process can hollow you out. It is exhausting, heartbreaking, and disorienting. Wanting help does not mean you are failing. It means you are human.

Support groups, hospice teams, death doulas, and trusted friends exist because no one should do this alone.  (Psst, I host a completely free support group for caregivers twice a month on zoom!)

If there is one thing people consistently wish they had known, it is this:  You are not broken for feeling lost during death. Death is unfamiliar territory, and most of us are learning it in real time.

Gentleness goes a long way here. With them. With yourself.

As always, if you need help or just some calming presence while caregiving please do not hesitate to reach out.

Caregivers Are Not Just Tired, You’re Soul-Tired: How to Honor That

Caregiver tired hits different.

This is not the kind of tired a nap fixes. It does not respond to a weekend off or a stronger cup of coffee. It settles into your bones, your breath, your sense of self. It shows up as forgetfulness, irritability, numbness, grief, resentment, and love all tangled together. You can sleep eight hours and still wake up exhausted. That’s because what you are carrying goes far deeper than physical fatigue.

Caregiving asks you to be constantly alert, emotionally available, and quietly resilient. You are witnessing loss in slow motion. You are holding worry that never fully turns off. You are making a thousand micro-decisions every day while pretending you are fine. Over time, that kind of vigilance reshapes your nervous system. Of course you are depleted. Of course your spirit feels worn thin.

This is soul-tired.

Soul-tired shows up when your inner resources have been stretched too far for too long. It comes from loving someone through decline. From showing up even when your own needs are waiting patiently in the corner. From being strong so others do not have to be. It is grief layered on responsibility layered on love.

And here’s the part caregivers struggle with the most: soul-tired deserves to be honored, not pushed through.

Honoring soul-tired starts with telling the truth

The first way to honor soul-tired is to stop minimizing it. Caregivers are masters at self-dismissal. Others have it worse. I chose this. I should be grateful. I just need to toughen up. None of those thoughts create relief. They create isolation.

Tell the truth to yourself first. This is hard. This is heavy. This is costing me something. Naming the weight does not make you weak. It makes you honest. Honesty is the doorway to care.

Let your exhaustion be what it is. You do not need a better attitude. You need acknowledgment.

Create space where you do not have to perform

Caregivers are often surrounded by people yet feel deeply alone. Conversations become logistical. Updates replace connection. You may feel pressure to stay upbeat or reassuring so others feel less uncomfortable.

Soul-tired needs spaces where you do not have to explain, educate, or protect anyone else’s feelings. This might be a support group, a trusted friend, a therapist, or a death doula. What matters is that there is somewhere you can exhale without being fixed or redirected.

You deserve places where your grief can be spoken out loud. Silence may look like strength, but it quietly drains the spirit.

Shift the idea of rest

Traditional self-care advice often misses the mark for caregivers. Baths, walks, and yoga are fine, but soul-tired requires something deeper. Rest becomes about relief, not productivity.

Relief might look like letting yourself cry without apologizing. It might look like sitting in your car after an appointment and doing absolutely nothing. It might look like asking someone else to make a decision for once. It might look like laughter that feels slightly inappropriate and exactly necessary.

Honor rest that nourishes your inner world, not just your body.

Allow grief to exist alongside love

Many caregivers feel guilt for grieving while the person they care for is still alive. There is grief for what has already changed and for what is coming. That grief does not cancel out love or devotion. It exists because of it.

Soul-tired often comes from carrying grief alone. When grief is acknowledged, it softens. When it is suppressed, it weighs more.

Give yourself permission to grieve in real time. You do not need to wait for a loss to mourn.

Ask for help before you are empty

Caregivers often wait until they are past their limit before asking for support. By then, everything feels urgent and overwhelming. Soul-tired is a signal, not a failure.

Help can be practical, emotional, or relational. Meals. Breaks. Someone to sit with your loved one. Someone to sit with you. Support is not a sign you are doing caregiving wrong. It is how caregiving becomes survivable.

You were never meant to do this alone.

Remember that you matter too

Caregiving can slowly shrink your sense of self. Your needs get postponed. Your identity narrows. Your inner life goes quiet.

You are still here. Your body. Your heart. Your future. Honoring soul-tired includes remembering that your life has value beyond what you provide for others.

You are allowed to care for yourself with the same tenderness you offer so freely.

Soul-tired does not mean you are failing. It means you are human in an inhumane situation. Treat that truth gently.

When Everything Changes: The Role of a Death Doula

A terminal diagnosis has a way of stopping time while the rest of the world keeps going on like nothing happened. One moment you’re worrying about deadlines, and what’s for dinner. The next, you’re staring at a future that feels foggy,and wildly unfair. It’s disorienting. It’s terrifying. And it’s deeply human to think, “OMG hang on.  What just happened?”

People often assume the hardest part is the idea of dying. But what hits first (and hardest) is everything else: the grief for the life you thought you’d have, the fear of what’s coming, the awkward conversations, the silence from people who don’t know what to say, and the exhaustion of holding it all together. A terminal diagnosis changes how you move through the world.

This is where a death doula can make a meaningful difference.

First things first: what is a death doula? (I hope you know this by now!)

A death doula (or end-of-life doula) is a non-medical support person trained to walk alongside individuals and families facing serious illness, dying, and death. We don’t replace doctors, nurses, hospice, or therapy. Think of us as the steady companion in the middle of the chaos.  The person who isn’t rushing, isn’t afraid of hard conversations, and isn’t going to disappear when things get uncomfortable.

We support emotionally, practically, and spiritually (if that’s your thing). We help you process what’s happening, make sense of what comes next, and figure out how you want to live now and not just how you’ll die later.

We have presence.

Holding space when everything feels like too much

After a terminal diagnosis, emotions rarely arrive one at a time. They come in waves.  Sometimes all at once, sometimes sneaking up on you in the cereal aisle. Fear. Anger. Sadness. Relief. Guilt. Numbness. Even moments of joy that feel confusing or “wrong.”

A death doula doesn’t try to tidy any of this up.

We don’t tell you to be brave. We don’t push positivity. And we definitely don’t say things like “everything happens for a reason.” (Hard pass.)

Instead, we listen. Fully. Honestly. Without flinching.

You can say the things you’re scared to say out loud. You can repeat yourself.  (I’ve heard someone tell me the same stories a dozen or so times, and everyone I treat as brand new) You can cry, swear, joke, rage, or sit in silence. Many people tell me they don’t want to “burden” their loved ones with how heavy things feel. With a doula, you don’t have to edit yourself. You’re allowed to be exactly where you are.

The practical stuff no one prepares you for

Let’s talk about the mountain of logistics.  They are not fun but they are important

A terminal diagnosis often comes with decisions about advance directives, medical wishes, hospice care, legacy planning, funerals, conversations with family, and yes… who gets what when you’re gone. Trying to handle all of that while emotionally reeling is a lot. Like, too much a lot.

A death doula helps break it down.

We help you understand your options, clarify your values, and make decisions at your own pace. There’s no “right” way to do this, but your way deserves to be honored and upheld. Whether that means writing letters, recording stories, planning a celebration of life, or deciding what comfort and dignity look like for you at the end, we walk through it together. One step at a time.

No pressure. No agenda. Just support.

Seeing you as a whole person and not just a diagnosis

Medical systems are great at treating illness. They’re not always great at tending to the person living inside that illness.

Death doulas focus on you.

Your story. Your relationships. Your fears and hopes. Your sense of meaning. Your unfinished business (emotional or otherwise). Your loved ones may begin to see you as a patient, but you’re still someone who loves deeply, remembers vividly, laughs loudly, and matters immensely.

We might help you create memory projects, facilitate meaningful conversations, explore spiritual questions, or simply sit with you while you reflect on your life. Sometimes the most powerful support looks like quiet presence. Sometimes it looks like laughter. Sometimes it’s both in the same hour.

Supporting the people who love you, too

A terminal diagnosis sends shockwaves through families and chosen families alike. Caregivers often feel overwhelmed, helpless, exhausted, and unsure if they’re “doing enough” or “doing it right.”

A death doula supports them as well.

We offer guidance, education, emotional support, and sometimes just a calm presence in the room. We help with communication, family dynamics, and those conversations no one wants to start but everyone’s thinking about. And yes, sometimes that support happens over a cup of tea, or a strong drink, while someone finally lets themselves fall apart.

Making room for what truly matters

Here’s the truth: a death doula can’t change a diagnosis. We can’t fix what’s broken or make this fair.  But we can help you live with intention, honesty, and connection in the time you have. We can help you reclaim a sense of agency when so much feels out of control. We can help you shape this chapter in a way that reflects who you are and what you value.

Even now (especially now) there is room for meaning. For love. For laughter. For hard truths and tender moments and memories that matter.

If you or someone you love is facing a terminal diagnosis, you don’t have to walk this path alone. Death doulas aren’t afraid of the hard stuff. We’ll meet you exactly where you are and walk with you, heart first, all the way through.

Top 5 Grief Experiences No One Prepares You For

We talk about grief like it’s one thing. A feeling. A season. Something you move through and eventually “close.”

That’s… not how it works.

Grief is sneakier than that. It shows up sideways. It rewires your body, your brain, and your expectations of yourself. And a lot of the hardest parts aren’t the ones people warn you about. No one pulls you aside and says, “Hey, this part might really mess with you!.”

So let’s talk about the parts no one prepares you for.

1. It’s a Full-Body Experience

Most people expect grief to feel like crying. What they don’t expect is exhaustion so deep it feels cellular. Brain fog that makes simple decisions feel impossible. A body that aches for no clear reason. A nervous system that’s suddenly jumpy, numb, or both.

Grief lives in the body long before the mind catches up. You might feel short of breath, heavy in your chest, or like you’re walking through wet cement. You may sleep too much, or not at all. Food might lose its taste, or suddenly become the only thing that feels grounding.

This isn't a weakness!!  Your body is responding to loss the same way it responds to threat. Once you know that, you can stop asking yourself why you “should be handling this better” and start listening to what your body is asking for instead.

2. The Loneliness.  (Even When You’re Not Alone)

In the early days, support often pours in. Texts. Meals. Check-ins. And then… it thins out. Life resumes for everyone else while yours feels permanently altered.

Even surrounded by people, grief can feel isolating. You might feel like no one really understands what you’re carrying. Conversations feel shallow. Laughter feels foreign. You may stop bringing up your loss because you don’t want to make others uncomfortable, or because you’re tired of hearing the same well-meaning but hollow responses.

This kind of loneliness doesn’t feel like the typical “I’m all by myself” alone.  You’ve changed in a way the world doesn’t quite know how to meet. And that disconnect can hurt just as much as the loss itself.

3. Grief Can Show Up as Anger, Guilt, or Even Nothing at All

Not everyone cries. Not everyone falls apart. Some people even feel rage.  At doctors, family members, God, the universe, or the person who died. Others feel guilt over things said, not said, done, or imagined. And some feel… strangely fine. Or numb. Or emotionally blank.

Here’s the truth no one says out loud enough: there is no correct emotional response to loss.

If ou’re numb, you’re not in denial. If you’re angry, you’re not an a-hole.  And if you feel relief it does NOT mean you didn’t love them!  Grief is complex, and it often comes wrapped in emotions that feel confusing or even uncomfortable to admit.

If your grief doesn’t look like what you expected, or what you think it should look like, that doesn’t make it less real. It just means it’s yours.

4. It Can Get Harder After Everyone Thinks You Should Be “Better”

There’s an unspoken timeline for grief in our culture. You get a few weeks of grace. Maybe a few months. And then the expectation quietly shifts toward productivity, normalcy, and resilience.

But for many people, grief intensifies after the initial shock wears off. When the logistics are done. When the casseroles stop coming. When you’re left alone with the permanence of the loss.

This is often when grief sinks deeper. You’re not “stuck.”  Your nervous system just finally has space to process what happened. Unfortunately, this is also when support tends to fade, leaving people feeling like they’re failing at something invisible.

You’re not behind. You’re not broken. You’re just grieving in a world that doesn’t give grief enough room.

5. Grief Doesn’t End.  But It Does Change

One of the most unhelpful things people are told is that grief is something to “get over.” As if love has an expiration date.

Grief doesn’t disappear. It evolves. It softens, sharpens, resurfaces, and settles again. Some days it’s a quiet ache. Other days it blindsides you in the grocery store over a song or a smell or a memory you didn’t see coming.

Over time, you don’t stop grieving, you simply learn how to carry it. Grief becomes part of life, woven in with joy, meaning, and connection. Not in spite of it, but alongside it.

And no one prepares you for the fact that healing doesn’t mean forgetting. It means learning how to live while still loving someone who isn’t here.

If you’re in the middle of any of this, especially the parts that feel confusing, isolating, or “wrong”, you’re not failing at grief. You’re experiencing it.

And you don’t have to do it alone.

If you need support that meets you where you are, I’m here. Sometimes the most healing thing isn’t fixing grief, but having someone walk beside you while you carry it.

Creating a Calm End of Life Experience

Here’s the truth: the end of life can be tender and chaotic at the same time. Medical equipment beeps. People whisper like they’re in a library. Someone’s asking where the chapstick is while another person is Googling “what does active dying look like” at 2 a.m.

Creating a calming end-of-life environment should NEVER be turning the moment into some Instagram-worthy candlelit montage. OMG please do not.  We want to create a space for the person who is dying (and the people who love them) so that everyone can breathe a little easier.  And not just the physical space but the emotional too.

Cool, Nikki but how do we do this in real, doable ways?  Glad you asked!  Because, you know, this is what I do.

Start With What “Calm” Means to Them

This is the most important part, and it’s the one people skip.

Calm is personal.

For some people, calm is silence and dim lights. For others, it’s baseball on the TV, a dog snoring at their feet, and their favorite people telling stories that make them laugh. One person’s peaceful sanctuary is another person’s sensory nightmare.  I’ve seen both!

If the person can still communicate, ask simple questions:

• What helps you feel relaxed?

• What feels annoying or overwhelming right now?

• Do you want quiet, music, or conversation?

If they can’t communicate anymore, think about who they’ve always been. How did they rest? What brought them comfort when they were stressed or sick in the past? You can also look for non-verbal cues that they’re stressed.  Furrowed brow, sour face, restlessness.

Soften the Sensory Overload

End-of-life spaces often become unintentionally loud, bright, and overstimulating. A few gentle tweaks can make a big difference.

Lighting:
Overhead lights are the enemy of calm. Use lamps, salt lights, or natural daylight when possible. Think “soft glow,” not “interrogation room.”  (Of all the times to give off that vibe…)

Sound:
Silence can be soothing, but it can also feel heavy. Music can help regulate breathing, ease anxiety, and provide emotional grounding. Choose music intentionally: favorite songs, instrumental pieces, nature sounds, or spiritual music if that fits. And yes, volume matters. This is not the time for surround sound.

Smell:
Scent is powerful. Familiar smells can be deeply comforting. A favorite lotion, clean sheets, a hint of lavender.  But subtle is the key word here. Skip anything strong or new that might be overwhelming or nauseating.

Make the Space Feel Human, Not Clinical

Whether someone is at home, in hospice, or in a facility, the goal is the same: remind them they are a person, not a patient.

Bring in:

• Favorite blankets or pillows

• Photos of people, places, or pets they love

• Meaningful objects (a rosary, a book, a quilt, a piece of art)

If medical equipment is necessary (and often it is), you can still soften the space around it. Cover what you can safely cover. Create visual warmth in the corners of the room. Small touches matter more than you think.

Create Emotional Calm, Not Just Physical Calm

Here’s the part no one prepares caregivers for: your nervous system affects theirs.  Yup.  They know when you’re anxious and that can make them anxious too.

If the room is full of tension, whispered panic, unresolved conflict, or people hovering anxiously, the dying person often feels it.

This doesn’t mean you have to be perfectly peaceful. (Spoiler: no one is.) It means being mindful of the emotional tone in the room.

Some ways to help:

• Step out to have hard conversations elsewhere

• Give people permission to take breaks

• Let silence be okay

• Speak honestly, gently, and directly

• HIRE A DEATH DOULA!!

This also means saying what needs to be said. Love. Gratitude. Forgiveness. Permission to rest. Those words can bring profound calm, even when nothing else does.

Establish Gentle Rhythms

Chaos often comes from uncertainty. Gentle routines can create a sense of safety.

This might look like:

• Playing the same music in the evenings

• Dimming lights at the same time each night

• Reading aloud for a few minutes each day

• Having a familiar person present during certain times

Ritual doesn’t have to be religious or formal. It just has to be consistent enough to signal, You are safe. You are not alone.

Don’t Forget the Caregivers (Yes, That’s You)

A calm environment isn’t just for the person who is dying. It’s for the people who are witnessing it.

If you’re running on fumes, your body tense, your jaw clenched, your breath shallow.  You’re doing the hardest job there is. And you deserve support too.

Drink water. Eat something with actual nutritional value. Step outside. Sit down. Cry in the bathroom if you need to. Ask for help and accept it when it’s offered.

Calm is contagious, but so is burnout.

There Is No “Perfect” Way to Do This

Let me say this clearly: if the space feels imperfect, emotional, messy, and deeply human, you’re probably doing it right.

Creating a calming end-of-life environment isn’t about control. It’s about presence. It’s about reducing unnecessary stress so love, connection, and dignity have room to exist.

You don’t need to get it all right.
You just need to show up with care.

And that, truly, is enough.

When You Don’t Feel Grief Because the Relationship Was Hard

I was chatting with a dear friend awhile ago about “Grief that isn’t there.”  And it’s stuck with me.  I’ve seen this before but didn’t give it a lot of thought.  I’ve been thinking about this one for awhile now and thought it deserved some space too.

There’s a kind of loss no one really talks about.  The one where someone dies and you don’t feel the thing everyone told you you’d feel.

No gut‑punch sadness. No constant tears. No sense that the world stopped spinning.

Instead, there’s quiet. Or relief. Or a confusing emotional shrug that leaves you wondering what’s wrong with you.

Nothing is wrong with you.

If your relationship with the person who died was strained, painful, distant, or complicated, your grief may not show up the way grief is “supposed to.”

Sometimes You Did the Grieving While They Were Still Alive

When a relationship is hard, the grief often starts long before death.

You grieve the parent who couldn’t be who you needed. The partner who caused more harm than safety. The family member who never showed up, never changed, or never took responsibility.

That kind of grief is slow and quiet. It happens in moments of disappointment or abandonment, boundary‑setting, and emotional survival.

So when death comes, your body may simply register that the struggle is over. Not because you didn’t care, but because you already carried the weight for years.

Not Feeling Grief Doesn’t Mean You Didn’t Love

We tend to equate grief with sadness. But complicated relationships don’t produce clean emotions.

You might feel relief that the tension is gone, guilt for feeling that relief, anger that resurfaces unexpectedly, or sadness that isn’t about missing them at all, but about what never was.

You may feel neutral. Or numb. Or oddly calm.

None of that makes you cold or broken. It means your emotional response is shaped by the truth of the relationship, not the fantasy version people prefer after someone dies.

You Don’t Have to Rewrite the Relationship Because They Died

Death has a way of polishing rough edges and erasing harm. Suddenly people expect you to remember only the good parts, speak kindly, forgive quickly, and grieve deeply.

You’re allowed to opt out.  Hit that Unsubscribe button!!

You can acknowledge that someone mattered without pretending they were safe. You can respect the fact of their death without romanticizing the relationship. You can feel nothing at all and still be a compassionate human.

Honesty is not disrespect.

What If the Grief Never Comes?

This is the question. The honest answer? Sometimes it doesn’t.

Not every death creates devastation. Some create space. Some create relief. Some create a sense of finally being able to exhale.

That doesn’t mean grief was skipped over. It means your system may finally feel done bracing.

And sometimes (not always) grief does arrive later, months or even years down the road. It often shows up not as missing the person, but as mourning the loss of closure, answers, or the possibility that the relationship might one day have been different.

That grief counts too.

Caring for Yourself When the Relationship Was Complicated

The most important thing you can do is stop judging your response. There is no emotional requirement after a death.

Pay attention to what is present instead of what you think should be. Relief, anger, neutrality, sadness for your younger self; all of these deserve space.

Be mindful about who you talk to. Not everyone can hold complicated grief without trying to fix it or clean it up. You don’t owe anyone clarity, forgiveness, or tears.

And let go of the word should. It has no place here.

Relief Is Not a Moral Failure.  FULL STOP.

This deserves to be said plainly.  

Feeling relief when someone dies does not mean you wished them harm. It often means the relationship carried stress, unpredictability, or emotional danger.

You can feel sad they’re gone and relieved they can no longer hurt you. You can feel nothing at all and still be a good person.

A Gentle Truth to Hold

Grief is not proof of love.

Sometimes boundaries were the love that was never given. Sometimes surviving the relationship was the work. Sometimes the grief happened quietly, over years, instead of loudly at the end.

If your grief is absent or barely there, trust that your heart is responding honestly to the life you lived, not the story others expect.

That honesty doesn’t need fixing.  It needs compassion.

How Creating a Death Plan Protects the People You Love

Most of us are excellent planners. We plan vacations, weddings, retirements, and what’s for dinner three weeks from now. But when it comes to the one thing we are all guaranteed to experience? Suddenly we go quiet. “I’ll deal with that later.” *shifty eyes*

Well, sometimes later has a way of becoming now.  Ask me how I know. (*cough cough* two very sudden and unexpected deaths in now *cough cough*)

Planning for the end of your life isn’t morbid. It’s merciful. It’s one of the most loving acts you can offer the people you care about, and one of the most empowering things you can do for yourself.

Because here’s the truth no one loves to say out loud: when there is no plan, someone else is forced to make decisions in the middle of shock, fear, and grief. Decisions about medical care. About comfort. About money. About what you would have wanted if you were able to speak for yourself. That’s a heavy burden to drop into someone’s lap while they’re already drowning.

A death plan is about taking ownership. It’s saying, I’ve thought about this. I’ve made choices. I’ve left instructions. It allows your loved ones to focus on loving you, not scrambling through paperwork or arguing over what you “would have wanted.”

And let’s be clear, planning doesn’t mean you have to predict every detail of how or when you’ll die. Life doesn’t work that way. A death plan is about values, preferences, boundaries, and clarity. It’s about answering questions like:

What matters most to me at the end of my life?
What does comfort look like for me?
Who do I trust to speak for me if I can’t speak for myself?
How do I want my body treated after I die?
What do I want my people to know?

These are deeply human questions. And they deserve more than a rushed conversation in a hospital hallway.

There’s also a quiet gift in doing this work while you’re healthy: it often changes how you live now. When you get honest about what matters at the end, you tend to get clearer about what matters today. Boundaries sharpen. Relationships shift. Priorities get rearranged. Suddenly you’re less interested in living on autopilot and more interested in living on purpose.

I’ve sat with countless families at the bedside, some with a plan, many without. I can tell you with certainty: the difference is profound. Planning doesn’t erase grief, but it softens the edges. It brings steadiness into chaos. It turns “I don’t know” into “I know exactly what they wanted.”

And if you’re thinking, I don’t even know where to start, you’re completely normal. Most people were never taught how to have these conversations, let alone write things down in a way that feels accessible and human (not like a cold legal document written in another language).

That’s exactly why I created my Writing Your Death Plan workshop.

This isn’t about fear-mongering or doom-and-gloom. It’s a guided, supportive space where we walk through the essentials together, at your pace, with room for humor, emotion, questions, and real-life complexity. You’ll leave with clarity, confidence, and something tangible your loved ones will one day be grateful for.

If you’ve been waiting for “the right time” to do this, consider this your nudge. Planning for the end of your life doesn’t make it happen sooner, I PROMISE.  But it will help you embrace the  life you’re living now and care for the people you love most.

Come do this important, meaningful work now, before it becomes urgent.

The workshop is in person in Columbus Ohio on January 14th at 6:30PM. Click here to reserve your spot now, before it’s full! I WILL be hosting this online in the coming months.  Please sign up for my newsletter to keep informed of that and any other workshops or events I have upcoming! 

The Ghost of Christmas Yet to Come: Imagining a Future That Still Holds Light

This ghost gets a bad rap. The dark cloak, the ominous finger pointing, the whole dramatic entrance. I mean…. In most versions of the Dickens Classic, they make it look like the Grim Reaper.  But maybe the future is not a monster in the corner. Maybe it is an invitation. A quiet one, sure, but still an invitation.

Grief can make the future feel like a blank page you are terrified to write on. It can feel like every sentence might come out wrong, or like you no longer recognize the main character. You might wonder who you will be without them, or whether joy has any room left to land in your life. But healing is not a betrayal of your grief. It is not “moving on.” It is moving with. It is carrying the love forward in new ways, some you have not even imagined yet.

The Ghost of Christmas Yet to Come asks a gentler question than you might expect. What do you want to grow toward? Not resolutions that you will forget by January tenth. Not reinventions that require you to pretend you are someone brand new. It asks for quiet intentions. The kind that honor where you have been and still make space for where you hope to go.

Try this: write a note to your future self. Maybe the you who will be sitting in next December, maybe the you who needs a reminder that growth can be slow and still be real. What would you want to say? What small light would you want to carry forward so you do not forget it? It does not need to be profound. It just needs to be honest.

You do not need a five year plan. You do not need a map with every mile marked. One flicker of hope is enough to begin again. One moment of willingness to imagine something beyond the ache is enough to shift the horizon a little.

Because even in grief, there is always something ahead. A sunrise that did not ask your permission to rise. A song that catches you off guard in the best way. A story still unfolding with you in it. The future is not waiting for you to be over it. The future is waiting to meet you exactly as you are, carrying what you carry, building what comes next one breath at a time.

If you’ve followed along through the ghosts of Christmas past, present, and future,  thank you for walking through this with me.

Grief doesn’t take holidays off. It doesn’t respect calendars or dinner plans. But like Scrooge learned, even the hardest nights can hold unexpected light. The ghosts didn’t come to torment him, they came to wake him up. Maybe grief does the same for us.

So if your holidays feel quieter, heavier, or different this year, that’s okay. You’re not behind. You’re becoming.

Here’s to carrying love through time.  Past, present, and yet to come.