Understanding Anticipatory Grief, Secondary Losses, and the Grief That May Have Started Long Before the Funeral

Use these links to jump to the section that feels most helpful right now.

• What is anticipatory grief?
• What are secondary losses in caregiving?
• How does dementia cause grief before death?
• How does caregiving change a marriage or relationship?
• What feelings are common in anticipatory grief?
• Why does caregiving feel so lonely?
• Why do caregivers need respite and rest?
• Is it normal to want the caregiving to be over?
• Does anticipatory grief make grief easier after death?
• Can a grief support group help caregivers?
• Where can I find caregiver grief support in Waterloo and the Cedar Valley?
• Frequently asked questions

Much of our Continuous Care work at Locke naturally focuses on what happens after someone dies. Yet during the past five years, around our grief-group table, we have heard something again and again: for many people, the grieving began long before the funeral.

Perhaps that is true for you.

Maybe you spent months or years living from one diagnosis to another, one treatment to another, one hospitalization to another. Maybe you watched the person you love lose strength, independence, memory, mobility, or the ability to do things you both once took for granted.

Perhaps you slowly became the one who handled everything—the medications, appointments, bills, meals, driving, phone calls, and decisions. Your marriage may have changed. Your family changed. Your finances changed. Your social life became smaller. The future you imagined quietly slipped away while you were too busy taking care of today to stop and grieve what had already been lost.

Those losses matter, and there is a name for some of what you may have been experiencing: anticipatory grief. Sometimes simply having a name for it helps. It certainly helped me.

What Is Anticipatory Grief?

Anticipatory grief is the grief we experience before someone dies.

It may become obvious after a terminal diagnosis, but it can begin much earlier, when chronic or progressive illness starts changing the person, the relationship, the family, or the future everyone assumed they would have.

That distinction matters because grief is not simply a response to death.

Grief is a response to loss.

Sometimes there is one moment when everything changes. A doctor says cancer. A husband has a stroke and his wife realizes the man who left home that morning may never return to the life they knew. A cardiologist explains that a weakened heart is not going to recover.

Other times there is no single dividing line.

Kidney disease progresses until dialysis reorganizes the family’s week. An aging parent needs a little help, then more, until an adult child realizes she is managing medications, groceries, appointments, bills, transportation, and decisions.

Dementia may unfold more slowly still. A forgotten appointment becomes a forgotten name. A misplaced item becomes suspicion. A familiar road becomes confusing. Eventually, the person who has shared your bed for fifty years may look at you and ask who you are.

Every caregiving story is different, but each can bring losses long before death. Children experience this too, though they show it very differently — I have written separately about anticipatory grief in children if there are young people in your family living through a serious illness.

What Are Secondary Losses in Caregiving?

We often call these secondary losses.

The illness may be the central crisis, but surrounding it can be dozens of other losses that never appear in a medical chart.

You may lose freedom, sleep, financial security, friendships, privacy, intimacy, companionship, social life, retirement dreams, or the simple ability to leave the house without first arranging care.

The future itself can become a loss. A couple who loved traveling stops making reservations because they never know when the next hospitalization will come. An adult daughter realizes there is no such thing as a simple weekend away anymore.

None of these losses may seem large enough by themselves to explain why you are so tired or emotional, but they accumulate. You adjust, then adjust again. You move the bedroom downstairs. You cancel the vacation. You take over the checkbook, then the driving, then the decisions.

Life becomes smaller one accommodation at a time.

And sometimes we grieve one accommodation at a time without realizing that what we are experiencing is grief.

Grieving My Husband While He Was Still Alive

During my years at Locke, I have not written very openly about the hardest parts of my own caregiving experience. I intentionally allowed much of that story to remain private.

I can share more of it now because I am no longer living inside it. I have grieved, rebuilt my life, and moved forward into a life that is very much my own. I am not sharing this because I need you to carry my story, but because seeing honestly into my experience may help you understand your own.

For much of my life, I thought grief began when someone died. Even after years as a pastor walking beside people through illness, death, and funerals, I did not recognize anticipatory grief when I was living it myself.

My late husband, Wendel, experienced serious medical complications for years. There were repeated hospitalizations and emergencies. Several times he had to be resuscitated. As his health required more from both of us, we downsized our home and, in many ways, our lives.

Then seizures led us to Mayo Clinic and a brain-tumor diagnosis.

Like so many caregivers, I simply kept adjusting. You do what has to be done. You learn the medication schedule. You make another appointment. You cancel plans. You solve the next problem. You hope. You worry. You get through today and deal with tomorrow when it comes.

During my early days at Locke, I learned about anticipatory grief, and suddenly I had language for something I had been experiencing for years.

I had been grieving too.

Not because Wendel had died. He was still very much alive. I was grieving what had already changed—the life we expected, the freedom we once had, the financial security altered by years of illness, the roles I had taken on, and the uncertainty of what might happen next. You too?

Seven months after I began working at Locke, Wendel died. His death brought its own grief, but it was not the beginning of mine.

In the years since, I have heard variations of that same story around our grief-group table. Someone comes believing grief began on the day a husband, wife, parent, or loved one died. Then, as we talk, the larger story emerges — the diagnosis, the treatment, the hospitalization, the day someone stopped driving, the friends who gradually stopped inviting them places.

Then one day someone says, “I think I had already been grieving for years.”

Maybe you have been too.

How Does Dementia Cause Grief Before Death? Understanding Ambiguous Loss

Dementia can make this especially painful because the person is physically present while parts of the relationship we once knew may be changing or disappearing.

Pauline Boss uses the term ambiguous loss for this kind of experience—a loss without the clear boundaries we normally associate with death.

Imagine a woman quietly saying, “I miss my husband.”

Someone who does not understand might think, But your husband is still alive. She knows that. She may prepare his meals, manage his medications, help him dress, answer the same question repeatedly, and listen at night to make sure he has not wandered. She loves him, and she misses him.

The husband who once helped make every important decision may no longer understand the decision being made. The wife who knew your history better than anyone may no longer remember the story you are telling.

That is a loss. It does not mean you love the person less. It means the relationship has changed, and part of you is grieving what used to be there.

Dementia can also change behavior in ways families find incredibly difficult to discuss. A gentle husband may become suspicious. Hallucinations may come at night. Someone who was never aggressive may strike out when frightened or confused.

Then morning comes, someone asks how he is doing, and she says, “He’s doing pretty well.”

Sometimes she is protecting him. She remembers the man he has been throughout their marriage and does not want the disease to become the story everyone tells about him.

There can be tenderness in that. But there is an important difference between protecting someone’s dignity and hiding circumstances that have become unsafe. When there is wandering, aggression, unsafe driving, hallucinations, or behavior that puts someone at risk, trusted family members and physicians need to know. The caregiver matters too.

How Does Caregiving Change a Marriage or Relationship?

Long-term illness gradually changes roles.

A wife becomes a medication manager. A husband becomes responsible for bathing and dressing his spouse. An adult child begins making decisions for the parent who once made decisions for everyone else.

Somewhere along the way, the relationship itself can begin to disappear beneath the caregiving.

I remember a conversation while Wendel and I were living at Landmark Commons. He had been hospitalized, and we were preparing for him to come home when the director spoke very directly to me.

“Vicki, he needs to go to The Pavilion, our medical facility. You can’t take care of him. It is too much. This will let you let go of being the caregiver and return to being the wife.”

I have never forgotten those words.

By then, caregiving had become the organizing principle of my life. I was cleaning up urine, watching constantly for what might happen next, and living in a state of hypervigilance.

When I tried to get him to do the physical therapy he needed, he accused me of nagging. I knew I was trying to help. Knowing that did not make the words hurt less. There were times I cried, times I became resentful, and times when what I wanted more than almost anything was simply to escape. Have you ever felt that way?

That is hard for caregivers to admit because we think we are supposed to be endlessly loving, patient, grateful, and willing. But love does not make us superhuman.

Sometimes I want to get out of here does not mean I don’t love you. Sometimes it means, I cannot continue carrying this much without relief.

Maybe you know that feeling.

Maybe you have cried in the shower because it was the only place no one could hear you. Maybe you have sat in your car an extra ten minutes before going back into the house. Maybe everyone keeps telling you how wonderful you are while inside you know you are exhausted, angry, and running out of patience.

Then, five minutes later, you are smoothing a blanket over the person you love, making the soup, finding the medication, or holding a hand.

That is the strange tenderness of caregiving.

You can be frustrated and still be gentle. You can be angry and still make the soup. You can resent what illness has done to your life and still kiss someone goodnight.

The presence of frustration does not erase love.

Sometimes the person we love needs more care than we can safely provide. Accepting help is not necessarily a failure of love. It may be one of the ways we keep caregiving from swallowing the relationship completely.

Sometimes you miss being the wife. Sometimes you miss being the husband. Sometimes you miss being the daughter instead of the caregiver.

And sometimes you simply miss yourself.

That, too, can be grief.

What Feelings Are Common in Anticipatory Grief?

Anticipatory grief does not always feel like sadness.

Sometimes it arrives as anger at the person you are caring for, followed almost immediately by guilt. Sometimes it is resentment toward siblings whose lives seem to continue uninterrupted while yours revolves around appointments, treatments, medications, and what might happen next.

There may be loneliness, jealousy, numbness, impatience, shame, or a weariness so complete you are not even sure what you feel anymore.

These emotions can be confusing because they seem to contradict love.

How can I love someone and resent what caregiving has done to my life? How can I want my husband to live and also want this ordeal to end? How can I be grateful my wife is still here and still miss the life we had before she became ill?

We tend to think one feeling should cancel out another.

It does not.

• You can love someone and be angry.
• You can be faithful and exhausted.
• You can be grateful and still want relief.
• You can want more time and still dread another crisis.

Then guilt comes. It says, I should have been more patient. Sometimes guilt can be useful; it may tell us there is something we want to do differently.

Shame is different. Shame says, What kind of wife feels this way? What kind of son resents caring for his father? What kind of daughter wishes she had one day when nobody needed her?

Shame makes us hide, and hiding is often where loneliness grows.

Why Does Caregiving Feel So Lonely?

Perhaps one of the hardest secondary losses to admit is loneliness, particularly when the person you are caring for is your husband or wife.

How do you tell someone you are lonely in your marriage when you are still married?

Your spouse may be sitting across the room. You may sleep in the same house. You may spend more hours together than you ever did before the illness.

Yet the companionship that once filled the marriage may have changed profoundly.

A stroke can alter speech, mobility, personality, or the way a couple shares everyday life. Progressive illness can turn conversations once filled with children, politics, vacations, and dreams into conversations about symptoms, medications, appointments, and oxygen levels.

Dementia may eventually take something even more fundamental: the shared history that allowed two people to look at each other and know exactly what the other meant.

Affection may change. Sexual intimacy may disappear. The person who once noticed when you were having a difficult day may no longer recognize what you need.

You can be deeply loyal to your spouse and profoundly lonely at the same time.

That loneliness deserves to be named. And this is where I want to say something I believe is especially important: find one person you trust enough to tell the truth.

Not everyone needs to know everything. You do not need to share the most private details of your caregiving experience with the whole family, but carrying everything alone can become its own kind of suffering. Your trusted person might be a sister, brother, longtime friend, pastor, counselor, grief educator, or someone who has already traveled this road.

That person does not have to live nearby. Support may be a regular phone call, an email after the house becomes quiet, or a conversation with someone several states away. And if the person you choose does not know what to say, that is all right. Listening is most of it.

What matters is that somewhere, with someone safe, you do not always have to say, “We’re doing pretty well,” when you are not.

Many caregivers know what it feels like to have everyone ask, “How is your husband?” or “How is your mom?” while secretly longing for someone to ask, “How are you?”

And then stay long enough to hear the real answer. Our grief resources include material written for caregivers, not only for people who have already experienced a death.

Why Do Caregivers Need Respite and Rest?

When loneliness, fear, anger, and exhaustion build, human beings naturally look for relief.

A caregiver pours a drink at the end of an impossible day. Someone watches television until two in the morning because those are the only hours when nobody needs anything. Another person disappears into a phone, shopping, work, or food — anything that lets the mind go somewhere other than illness.

Not every distraction is a problem. Sometimes a break is exactly what we need. The better question is whether the escape is helping you rest or beginning to create another problem. Another useful question is, What am I trying not to feel for a little while?

Once we understand the need underneath the escape, we have a better chance of finding something that actually restores us. Maybe you need someone to stay with your spouse while you have dinner with a friend. Maybe you need an afternoon outside the house—a walk, golf, a movie, church, or coffee with someone who remembers who you were before caregiving became such a large part of your identity.

You are allowed to still have a life. Sometimes caregivers need someone to say that out loud.

Is It Normal to Want the Caregiving to Be Over?

There is another thought caregivers sometimes carry in silence: I just want this to be over. Then comes the guilt. Do I want my husband to die? Am I wishing for my mother’s death? What kind of person thinks something like that?

Often, I want this to be over means many things.

You may want the suffering to end. The uncertainty. The emergencies. The treatments. The sleepless nights. The decisions. The waiting. The watching someone you love decline.

You may want your own suffering to stop too. That can be the hardest part to admit.

Years of caregiving can leave a person physically and emotionally depleted. Wanting relief does not necessarily mean wanting the person gone.

Sometimes the mind is simply saying, I cannot imagine continuing to live at this level of intensity indefinitely.

There may even come a time when your prayers change. For a long time, perhaps you prayed for another treatment, another recovery, another year. Then one day, you find yourself praying for comfort, peace, or release. Hope changes, but love does not have to.

Does Anticipatory Grief Make Grief Easier After Death?

Anticipatory grief does not mean you have completed your grieving before someone dies.

You may have grieved many losses along the way, but death creates a loss of its own. The person who was still physically present is now gone.

For a long-term caregiver, something else happens at the same time: the caregiving stops. There are no medications to give, no appointment tomorrow, no treatment schedule to organize, no oxygen tubing to check, no listening during the night for movement in another room.

A life structured around another person’s needs can become unexpectedly quiet.

That quiet may bring sorrow and relief together.

Relief after a death can be confusing, but relief does not mean you are glad someone died. You may be relieved the suffering has ended, relieved you are no longer waiting for the next crisis, or relieved that your own body can finally come down from years of constant readiness.

Then another secondary loss may reveal itself: the loss of the caregiver role.

For years people asked, “How is he?” or “How is your mom?” Your calendar revolved around someone else’s needs. Much of your day had purpose because something needed to be done.

Then suddenly it doesn’t, and you may find yourself standing in the middle of a quiet house wondering, Who am I now? That question belongs to grief too. If you are wondering how long grief lasts, the honest answer is that it does not follow a schedule — and years of caregiving beforehand do not shorten it.

Can a Grief Support Group Help Caregivers?

The truth is, I doubt I ever would have joined a grief group on my own. But when Wendel died, I was already leading one.

I discovered firsthand that there is something healing about not having to explain every feeling. Around a grief-group table, someone may say the very thing you have been afraid to admit, and suddenly you realize you are not the only one who has felt that way.

We have watched men discover this too. Sometimes a man comes simply because a friend does not want to walk through the door alone. He has no intention of becoming a “grief-group person.” Then he comes back. Over time, he listens, talks when he is ready, and often becomes the person offering encouragement to someone newer at the table.

A good grief group is not about forcing anyone to cry or disclose something private. Sometimes you talk. Sometimes you listen. There can be tears and serious conversation, but there can also be laughter, friendship, ridiculous stories, and memories that deserve to be told again. There are many reasons people benefit from a grief support group, and needing one is not among the requirements for coming.

There is no right way to perform grief here. You can simply come as you are.

Where Can I Find Caregiver Grief Support in Waterloo and the Cedar Valley?

Our grief support groups are open and ongoing because grief does not follow a calendar. Some people come soon after a death. Others come months or even years later, after family and friends have resumed their lives and they realize they still need somewhere to talk about theirs.

You do not need to prepare anything or know what you are going to say. You can come once, have a cup of coffee, listen if that is what feels right, and decide for yourself whether being with people who understand might help.

If you have loved someone through years of illness, you may have felt exhausted, lonely, angry, frightened, resentful, guilty, relieved, devoted, tender—or several of those things at once. There is no judgment here, only people who understand.

I cannot change what you have been through or take away the losses you are carrying. But I can encourage you not to carry all of them alone.

And if you would like a place to begin, our evening grief group is restarting at Locke at Tower Park on Thursdays at 5:00 p.m. We also meet at Locke on 4th at 1:00 on Thursdays. All groups are free and open to the public, and you are welcome to bring a friend.

You do not need to call yourself a “grief-group person,” and you do not need to know what you are going to say. Come as you are. There is space at our table for you. And if a phone conversation is all you need, just reach out to our offices.

Frequently Asked Questions About Anticipatory Grief

Is it normal to grieve someone who is still alive?

Yes. Grief is a response to loss, not only to death. When serious illness changes a person, a relationship, a family, or a future, those are real losses and grieving them is a normal human response. Many caregivers only recognize years later that what they were feeling all along was grief.

What is anticipatory grief?

Anticipatory grief is the grief experienced before someone dies. It often becomes obvious after a terminal diagnosis, but it can begin much earlier, when chronic or progressive illness starts changing daily life, roles, and expectations for the future.

What are secondary losses?

Secondary losses are the losses that surround a serious illness without appearing in any medical chart — freedom, sleep, financial security, friendships, privacy, intimacy, social life, retirement plans, and the future you had imagined. Individually they can seem small. Together they explain a great deal of caregiver exhaustion.

Is it normal to feel angry or resentful toward someone I am caring for?

It is common, and it does not mean you love the person less. You can love someone and be angry, be faithful and exhausted, be grateful and still want relief. One feeling does not cancel out another. Guilt often follows these feelings, and shame makes us hide them, which is usually where loneliness grows.

Is it wrong to want the caregiving to be over?

Wanting relief is not the same as wanting the person gone. “I want this to be over” usually means you want the suffering, uncertainty, emergencies, and sleepless nights to end — including your own. Years of caregiving deplete people physically and emotionally, and that is a human limit rather than a moral failing.

Does anticipatory grief mean grief will be easier after the death?

Not necessarily. Grieving losses along the way does not complete your grieving in advance. Death brings a loss of its own, and for long-term caregivers it also ends the caregiving role that had organized daily life. Sorrow and relief often arrive together, along with the question of who you are now.