Anticipatory Grief in Life's Transitions

"Something about early grief that perplexed me was how I felt like I was walking around in another dimension. My body was there but my heart and mind were elsewhere. I was impenetrable by the trivial. Rather, I began to see, deeply, into the pain of others, even strangers, and that was all that mattered to me. Maybe because they, too, knew the secret."

-Dr. Joanne Cacciatore

Anticipatory grief refers to grief we feel in anticipation of a future loss.

In the work I do, grief is all around. Whether it be a loved one grieving the loss of the relationship they had with a family member as this person steadily transitions into the stages of dementia. They start to notice subtle changes in their loved one's behaviors, their memory, and their health. It reminds them of what's slipping away. It can be grief that an individual experiences as they steadily decline into further progression of their diagnosis causing them to lose some of their independence or all of it completely. They no longer are able to walk, drive, cook, or simply do the pleasures they once enjoyed.

When we think of grief, the first thought many of us have, is the grief we experience from physically losing someone. This is also part of anticipatory grief, especially when someone has a terminal diagnosis. It's the thought that constantly lingers in one's mind. Knowing that at some point, things will come to an end.

And the hardest part of it all, is never knowing when the end will be.

Anticipatory grief reminds us that loss doesn’t wait for the final moment. It begins in the shifts, the small absences, and the quiet changes that alter our lives long before a goodbye is spoken.

Grief Before the Goodbye

Often times, the grief before the final loss is the hardest and the longest.

This type of grief is complicated. Families and individuals often find themselves holding two realities at once: cherishing the moments that remain, while quietly mourning what is already gone. There is joy in the presence of still being alive, and yet a sorrow that lingers in the background, whispering that time is slipping away.

At first, the subtle changes are gentle. They come and go intermittently, sometimes they aren't even noticed. If they are, they are dismissed by laughter. But as time progresses, the subtle changes become not so subtle. This is when the anticipatory sets in.

I’ve often heard people say, “It feels like I’m losing them piece by piece.” And that is the heart of anticipatory grief. It's the experience of grieving before the actual goodbye, of feeling the weight of loss while love is still present. And it's difficult because in reality, there isn't anything one can do to change the trajectory of what's to come. All they can do is be a witness to it all and that's what makes this grief difficult. It's almost as if one is being tortured having to watch helplessly while time starts to take away all that once was.

This grief contains history. It's history that is encapsulated in the memories of those that aren't affected by the decline, or in those that are completely coherent to witness what is happening to themselves. The history is all of the years they once shared memories, laughter, love, sorrows, joy, and life with those around them. As time continues, this history fades and becomes a distant reality. It's almost as if this was never reality, only a fever dream.

When a once lively conversation is replaced with silence, when familiar routines fall away, or when the personality of someone they love begins to change it starts to feel like the person that stands before them was never the person who is encapsulated in the history. Though they know it still is them, they also know that person isn't the same person they once were.

It's a challenge on my end because there isn't anything I can do. I can't change what's happening. I can only comfort. I can comfort families and individuals by naming the anticipatory grief. Naming this grief can bring a sense of relief. It helps families and individuals understand that the heaviness they feel is not strange or misplaced. It is grief making itself known early, asking to be acknowledged. And in that acknowledgment, there can be comfort.

This may sound simple, but the simplest things go a long way in this field.

What I have found, is that many often feel as if they are alone in all of this. But when they are informed of other stories I have encountered, you can see a shift in their bodies. A sense of relief. Their shoulders soften. They look at me with curious eyes. Grief makes us feel alone. Though each grief is completely unique to every individual, the common denominator is some form of loss.

Loss of Independence

It's not just families that experience anticipatory grief; it's the individual themselves.

For those that are coherent to bear witness to all of the changes that are happening to themselves. They no longer recognize the person that stares back at them in the mirror. It becomes unbearable to look at themselves sometimes. They become filled with shame because their sense of worth is shattered. Their new reality is a difficult adjustment to come to terms with. And sometimes, they can't come to terms with it.

For them, it's as if they are losing pieces of their identity. They no longer can do the simple pleasures of life. They can no longer drive. They can't cook. They can't live alone. They can't walk freely. They can't even put on their clothes. Each day feels like a constant battle with their body, and they have no control. It's as if every day they are having to sacrifice a life they once knew.

I often see the frustration they experience. They get upset at themselves because they feel as if they should still be able to do the simplest of things, but the brain no longer is communicating with other parts of their body. It leads to feelings of defeat and a sense of "no purpose to live." It's one of the hardest things I bear witness to.

I see the frustration and sadness that fills them when people say to them, "At least you're alive" or "It could be worse." But the truth is, they often don't wish to be alive anymore and to them, this is the worst. And I understand that others don't say these things with ill intent. They are just trying to provide words of encouragement, but for those who aren't experiencing these losses could not fathom how losing function is monumental to someone who is experiencing it.

Again, sometimes all you can do as a bystander is to just sit and listen. It's honestly the best thing you can do for someone. You don't have to understand how they are feeling completely. But if you just listen, you can hear the pain that fills them. You can hear the defeat. And really, this is what they need. A place to vent and get things off their chest because they are exhausted of pretending like everything is okay, when really, nothing feels okay. They no longer are the person they once knew and are having to adapt to a new life each day.

As for me, I listen. I let them get everything off their chest. Then they will look at me and say, "I don't mean to be rude, but this is my honest truth." I just nod and tell them, "You're not being rude at all. You're speaking your truth." I would rather have them speak their truth than internalize it because that would tear them apart in the end and my goal is to help one find some form of peace with this new life. But sometimes I can't, and that's okay too. Sometimes we end up saying the same thing over and over again. That's what helps some. Acknowledging this current reality instead of dismissing it. It doesn't mean they need to accept it, but it also means they don't have to lie to themselves.

Supporting someone through the seasons of change means creating space for their grief. It means listening, acknowledging what has been lost, and finding new ways to honor dignity. Perhaps by involving them in decision-making, adapting tasks to their abilities, or simply letting them voice what hurts. Each person is like a snowflake, unique in their own way. What works for one might not work for another.

In recognizing this grief, we don’t take it away, but we remind the person that they are still seen, still valued, and still themselves. Their grief isn't something to be dismissed.

Caregiver Grief

While families often carry the sorrow of witnessing change, there is another layer of grief that runs deeper for those who step into the role of daily caregiving. Caregivers do not just watch the decline, they live beside it, carrying both the love and the labor. Their grief is quieter, more constant, and often unseen.

Whereas the grief I discussed in the first section, is grief that is not constant specifically because loved ones aren't with the person every day. That grief is more so when a loved one lives in a facility or a different setting where their loved ones aren't caregiving.

Caregiver grief comes not only from watching a loved one fade, but from the slow erosion of life as it once was. The daily routines, the small freedoms, the energy for self-care are the sacrifices often made without hesitation, but they carry a cost. Many caregivers grieve the loss of their own independence even as they fiercely protect the independence of someone else.

There’s also a tenderness in this grief. It lives in the moments when a caregiver longs for who their loved one used to be, while still showing up for who they are now. It shows up in the exhaustion of the body and the heaviness of the heart, and yet beneath it all, it is love made visible through action. But caregivers suffer in silence often. They too feel a depth of lonesome.

Not only do they make tremendous sacrifice to be the sole caregiver, but they also witness the challenges their loved one goes through as they decline. One could say they too are experiencing their loved one's losses as they too have to figure out new ways to adapt in order to provide care as the decline progresses. They witness the frustration and sadness that their loved one goes through on a constant basis. Whereas the family member who doesn't see their loved one constantly, often gets a softer version of their loved one. They often don't see the day-to-day struggle. In a sense, the caregiver also absorbs the losses their loved one experiences. It becomes their reality too.

Unlike anticipatory grief experienced personally, caregiver grief carries a unique mix of sorrow and responsibility. Caregivers often juggle daily tasks, medical decisions, and emotional support, all while quietly mourning the gradual loss of who their loved one used to be. This dual role can create feelings of exhaustion, isolation, and even guilt. Guilt for grieving too early, or for wishing for relief. And they often feel alone because they are in a sense confined to their home because their freedom is limited. With limited freedom, they don't get the opportunity to seek support or talk to others who are experiencing a similar situation or who have experienced the caregiving role. Caregiver grief is a difficult one to reach because of the isolation and if they have not reached out for support.

Acknowledging caregiver grief is vital, because it reminds those who carry this weight that their feelings are not weakness, but a natural response to a difficult role. To grieve while caregiving is to honor both the past and the present daily, to recognize that love and loss often walk hand in hand. this grief is difficult too because as time progresses the line between each role, loved one and caregiver, become blurred and it's often difficult to separate the two.

By naming this type of grief, caregivers can begin to seek support and compassion, both for themselves and for the shifting relationship. Caregiver grief is not about letting go of love, but it’s about holding on while learning to navigate change, one step at a time. And this grief holds many losses because it's not just one person, but two, who are losing parts of themselves and the things they love.

Walking With Anticipatory Grief

Anticipatory grief is not something to rush or fix, but it is something to walk with. Whether you are the person experiencing loss or a caregiver witnessing change, grief asks for patience, attention, and gentle acknowledgment. It's not something to be dismissed.

There are many ways to support one another through this journey:

• Name it – Simply acknowledging that grief exists can bring relief.

• Talk about it – Share what you feel without fear of judgment.

• Find small comforts – A shared laugh, a favorite song, or a quiet ritual can anchor you in moments of sorrow.

• Allow presence and silence – Sometimes words are not needed; just being together is enough.

• Seek support – Trusted friends, professionals, or groups can help carry the weight.

Supporting someone through anticipatory grief does not mean removing the sorrow; it means creating space for it, holding it gently alongside love, and helping each other navigate the changes with compassion.

Grief does not follow a timeline. By walking alongside one another, we can honor both what has been lost and what remains, allowing the heart to carry love and sorrow together.

If this reflection resonates with you, know that you are not alone. I am here to help guide families and individuals through these challenging transitions. Whether through 1:1 nursing support, end-of-life planning, or simply providing a safe space to share and process these feelings. Together, we can navigate anticipatory grief with care, presence, and understanding, so that even before a goodbye, there is peace, connection, and room for love to continue.