GRIEVING PARENTS & CAREGIVERS

Typically, we think of grief happening after a death. However, the grief process starts as soon as you realize you might lose something or someone. This is called anticipatory grief and includes all parts of the grief process that occur before or in expectation of a death or loss.

While few talk about it, many experience anticipatory grief. For caregivers of children with severe illnesses and injuries, it often includes mourning the many losses that occur from diagnosis through end of life. You might grieve your child’s lost abilities and activities they can no longer manage. You may also mourn your hopes and dreams for your child and the future you had planned.

Anticipatory grief can be difficult and confusing, leading to feelings of isolation or guilt. You might think you should not be mourning before your child has died. Or you may worry it appears you have given up. You might even feel you have let down your child by failing to make them better. None of this is true, though others have felt the exact same things as well.

Additionally, some parents struggle because they wish for their child’s pain to end, while not being ready to let them go. Or you may find yourself thinking a lot about missed milestones or events and what life will look like after your child is gone. Please don’t worry and be kind to yourself. While anticipatory grief is incredibly painful, it does not mean anything is wrong.

The anticipatory grief process will not necessarily lessen your pain after your child’s death. But it can provide your family the opportunity to plan and discuss options for end of life. For some, anticipatory grief will also allow you and your family to say goodbye, and more easily find peace, closure, and healing later on.

That said, if you are struggling, do not wait until after a child’s death to seek help. Grief support and counseling can be useful to you in the here and now. For recommendations, speak with your or your child’s medical provider. If anticipatory grief becomes overwhelming and interferes with your ability to function, please don’t wait to reach out.

Anticipatory grief looks different for everyone, and there is no right or wrong way to feel or act. However, there are common reactions you can expect. You may recognize several of the signs of anticipatory grief listed in the table below.

As your child reaches the end of their medical journey, you are likely thinking about how to make the most of the time that is left. Goals of care conversations are an important part of this process. Goals of care discussions are conversations between families and medical teams focused on understanding the family’s values and preferences when making medical decisions. Essentially, they are a way for your family to share your goals for your child’s health and lifestyle, as well as evaluate treatment options.

Goals of care can be focused on a cure, rehabilitation, extending life or comfort. And as your child’s health and family’s circumstances change, it is normal to adjust them. You may already be familiar with these conversations as they should occur frequently throughout the treatment process. You likely had a similar talk with your child’s doctor at their diagnosis and regularly as their treatment and condition progressed. And now, as your child enters the advanced stage of their illness or injury, goals of care are equally important.

Goals of care conversations may involve:

1. Discussions about the expected course of your child’s illness / prognosis
2. Sharing priorities, goals, values, and worries about your child’s medical treatment and the remaining days of their life
3. Exploring options that align with your identified goals and values. This should include discussions about the benefits, drawbacks, risks and impact of each option on your child and your family’s lives.

Specific topics you may wish to talk about in goals of care meetings for your child include:

1. The likely course of your child’s condition and how it will impact them over time
2. Your goals for end of life care, such as extending life vs comfort and symptom management
3. What your child wants their final days to look like, including where they’d like to be (at home / in hospital), who they want to be there, and what they want to be able to do in the time they have left
4. Which outcomes are acceptable, and which are not
5. What you are willing to sacrifice to achieve your goals
6. Whether to participate in clinical trials
7. What life saving measures your family would like taken or avoided
8. Whether and when you wish to use palliative care, hospice care and concurrent care

While these conversations are often guided by your child’s medical team in a supportive environment, it is important to also talk privately with your partner/co-parent and child. Some families also choose to involve siblings or other close friends and relatives. Who you involve and the amount you include your children will depend on your children’s ages and family’s preference. Your exact goals of care will also be completely unique to your family and child. Remember, like most things throughout your child’s treatment, there is no clear right or wrong option.

That does not mean that making these decisions is an easy process. It’s natural for people to respond differently to stressful situations and when opinions differ, conflict will arise. This can become especially challenging when co-parents are separated or divorced, and/or if the child’s wishes differ from their parents. If you need outside support, palliative care teams can often be helpful in facilitating and supporting these discussions. You can also find more information on conflict in the Relationships and Conflict After a Child Dies section.

While no one wants to have to talk about end of life decisions, these conversations can be very helpful. Clearly expressing preferences and desires can provide everyone a greater sense of safety and control. And by having honest discussions with your medical team, you can better understand your child’s health and treatment options. Your entire family may also feel more confident your values and wishes are being honored throughout the process.

Including children in planning end of life care also has several benefits. The process of sharing values, preferences and fears can spark important conversations and bring your family closer. Honoring your child’s wishes often also brings a sense of comfort, both now and after they are gone.

For more information on including your child and their siblings in end of life planning and care, visit the Children at End of Life and Grieving Siblings sections. You can also find more information and resources for making decisions and managing end of life in this NIH guide for parents and caregivers.

The period leading up to your child’s death and after their passing is incredibly overwhelming. On top of your grief, you may be dealing with medical trauma from their diagnosis and treatment, as well as the needs and feelings of your loved ones. And that’s just the emotions! Because no one likes to talk, never the less think, about the death of a child, many parents and caregivers are shocked by the amount of practical things they need to decide.

Below is an introductory list of things to consider as your child nears end of life. While in no way exhaustive, our hope is that it will give you a place to start. Take your time, as most of these decisions are difficult. If you feel overwhelmed, it can be helpful to identify what needs to be handled right away, what can be decided later, and what can be done by someone else. And of course, be sure to speak with your partner/co-parent, close family, and children, as appropriate, about what they desire.

At the hospital or clinic, your child’s palliative care, hospice, medical and social work teams may be able to offer insight. You may also wish to speak with trusted friends, religious leaders, other bereaved parents and experts such as a funeral director or financial advisor. All can offer useful information, but ultimately you know your family best and must trust your instincts to decide.

Finally, please note it is normal to have different opinions and conflict over these important questions. Have patience with each other, work to actively listen, and share openly the reasons for your opinion as you decide. Professional mediators, therapists and grief counselors can also be helpful should conflicts become too intense or if you cannot find a compromise.

Things to Consider When Your Child Is Dying

1. Plans for your child’s body – This includes whether they/you prefer burial or cremation, the purchase and design of a headstone or urn, and if you will donate tissue or request an autopsy. Your medical team and a funeral director can offer guidance.
2. How you will share the news of your child’s death with friends, family and your community – This includes when you will share the information, how (emails, calls, obituary etc.) and who will be in charge. More on this topic can be found under Sharing the News of Your Child’s Death below.
3. Plans for any end of life ceremonies or other ways to honor your child
4. How you will manage the financial implications of your child’s passing – Consider the cost of their burial/cremation and end of life ceremony, as well as outstanding medical bills. You might also want to think about what to do with any savings accounts. Speak to your social work team about possible financial support, and/or to a financial advisor.
5. How siblings will be involved in end of life care and memorial ceremonies, as well as plans for their care while you grieve and manage end of life
6. What emotional support is/will be available for you, other members of the family and your child – This may include support groups, peer mentors and mental health professionals such as a therapist, grief counselor or psychologist.
7. How family members will manage work and/or school while grieving – Speak to any employer’s human resources department and any surviving children’s schools about what accommodations are available and for how long.
8. What bereavement resources you may need or desire – See the Resources for Grieving Parents and Caregivers section below for suggestions.
9. Plans for your child’s belongings – You may wish to speak to your child about their wishes and/or put off making any decisions about possessions for a time.
10. The plan for your child’s social media and online accounts such as email, music subscriptions etc. – Be sure to gather log in information, if possible, from your child. Otherwise, you may need a death certificate to gain access after they have died.
11. More information on planning end of life ceremonies, financial considerations, autopsies and organ and tissue donation can be found at the end of this NIH guide to end of life.

Obviously you will never forget your child. (Though many fear they will.) But it can still be very healing to take part in memory making activities, both for you and your loved ones. These types of activities can help reduce feelings of loneliness, create positive memories and leave you with keepsakes for life.

Some ideas for memory making include:

1. Making audio or video recordings and taking photos as much as possible. You can also choose favorite photos together to make an album or printed photobook.
2. Engaging in activities your child enjoys, such as art, games, listening to their favorite music or watching their favorite show.
3. Buying or making matching clothes, jewelry or other keepsakes for you and your child. You can also do this to unite every member of the family.
4. Creating art with your child’s hand, foot, or thumbprints. You can try clay, plaster, paint, tracing, ink or all the above.
5. Making a memory box with special treasures, notes, photos and other mementos.
6. Visiting your child’s favorite place or a location that holds meaning for your family. Or go the opposite way and plan the trip of a lifetime. Some wish granting nonprofits offer financial and/or logistical support for travel to children who are dying.
7. Making a playlist of songs you love and/or playlists to sooth your child during difficult or painful times. This is a great activity to involve any siblings in.
8. Planting a tree or other plant in memory of your child.

Remember, memory making does not have to be a formal thing. It can happen when you don’t expect it and in daily life. Family meals, daily rituals and even treatment experiences can become significant and meaningful. If you are too overwhelmed with managing end of life care and day to day responsibilities, know that is completely fine. You will still have special moments to remember with your child.

Grief is complicated and challenging, to say the very least. It is defined as the emotional, mental, spiritual and physical response to loss. What that really means is that grief is all your feelings, thoughts and reactions to losing something or someone. And just like you are wholly unique, your experience of grief will be entirely your own. Even members of the same family will grieve differently, though you suffered the same loss.

Your grief process after your child dies may be like what you experienced beforehand as you anticipated their loss. (See Anticipatory Grief in Parents and Caregivers above for common responses.) But how you react to their actual death may surprise you. Despite the common idea of the 5 stages of grief, the process can be unpredictable and does not follow a clear path or timeline.

After your child’s death, you may feel you’ve failed as a parent because you were unable to protect them or prevent them from dying. This can cause feelings of guilt or shame. You may even question the decisions you made caring for your child or if you are still a parent at all. Primary caregivers especially can feel they’ve lost their identity and purpose once their life is no longer devoted to managing the medical complexities and daily life of their child. This is all normal, if incredibly hard.

Bereaved parents and caregivers can also feel a deep void or emptiness after their child passes, or be lonely and withdraw. If the treatment process was especially long or difficult, many parents also feel relief, even if they are deeply saddened their child is gone. Other common emotions include anger, fear, disbelief, shock, and numbness. You may even sometimes feel happy and laugh. This is completely okay. It does not mean you are grieving wrong.

Memories can also be challenging. You may worry you’ll forget things about your child. (Trust us, you won’t forget the important things.) Or you might be haunted by things from the past – how your child looked while sick or things that occurred during the treatment or dying process. If seeing pictures or your child’s belongings is very upsetting, it is perfectly okay to put them away for a time. It does not mean you do not miss or love them. That said, it is best to avoid big decisions or getting rid of anything for a while. Feelings and memories change, and you may later want to have some of it around. And of course, if thoughts and memories interfere with you everyday life and ability to function, it is never too soon to seek professional support.

The death of a child isn’t something you get over. It is simply something you learn to live with. Grief is an ongoing experience and while coping with the loss of a child may get easier, it is also important to recognize that certain events, places, things, or dates can trigger symptoms of grief even after significant time. For example, important dates and milestones such as birthdays, changing or getting rid of your child’s bedroom or toys, the anniversary of your child’s death or diagnosis, and holidays can be especially hard. Some say the second year is the most difficult, as the initial shock has lifted, and others have moved on.

If you or another family member experiences an illness or injury, this can also cause feelings of grief to occur. Or you may struggle when your child’s friends accomplish certain things or hit milestones. Knowing this in advance and planning ahead can be helpful and provide a sense of control.

Seemingly random things may trigger grief as well. But often, if you take some time to reflect on it, you’ll discover a connection. Your child’s favorite foods, a certain smell or something tied to a special memory may suddenly make you sad. Again, this is normal, and you may just need to allow yourself to grieve for a time.

No one can predict how you’ll feel after your child’s death or what exactly will help you cope. The things you did to manage your stress and feelings throughout the treatment process may continue to be helpful. However, you may also need to find new strategies.

Below are some ideas from experts and fellow grieving parents that have helped others before.

1. After the death of a child, you are often managing a lot. This can include your own grief, the needs of your other children and/or family members, financial difficulties, and a strained partnership. It is normal to feel overwhelmed. Be patient with yourself and keep expectations low.
2. Self-care is extremely important as you go through this challenging time. Even though it may be difficult, try to maintain basic tasks, such as eating and sleeping regularly, maintaining basic hygiene and participating in some physical activity. If you are struggling, start small and take it one day at a time. Getting out in nature, journaling, spending time with pets and enjoying a hobby can help.
3. Acknowledge and respect that everyone grieves differently and at different times. You may feel pressure from others to act or feel a certain way. Or they may expect you to “get over it” or “move on”. However, it is important to allow yourself to grieve at your own pace. Seek out those who will support you, wherever you are in your grief process, and are in it for the long haul. Try to follow this advice for the other members of your family as well.
4. Connect with others, including romantic partners, friends, or family members. Relationships and family roles may change after your child’s death. Give yourself time to find a new normal.
5. Ask for and accept help – emotional, practical and informational. No one can do it all, especially while in deep grief. This can be especially important if you are struggling with caring for your remaining children/child. For ideas on how others can help, visit our Community page and this article on Real Gifts for Your Family. 
6. Talk about your child who has died. Using their name and sharing memories can be very healing.
7. Allow yourself a break but try to get back into a routine as soon as possible. This can help you re-engage and find your new normal. If you’re struggling to get started, focus on taking small actions each day and setting simple goals. Can you call a friend? Run an errand? Work for half a day? In the meantime, speak to your employer and others to whom you have commitments about what accommodations can be made until you are ready to return.
8. For some, it can be tempting to ignore feelings in order to focus on what “needs” to get done. However, avoiding painful emotions or dealing with your grief can prolong the process or lead to depression later on. Allow yourself to feel your feelings, whatever they are. Everything will eventually get done and there are others who can help.
9. Relationships evolve over time and people in your life will react differently to death of your child. Surround yourself with those who are most supportive. The people who step up may surprise you. And allow yourself to limit contact with those who are not. These losses, unfortunately, may also cause you grief but it’s important to protect yourself during this tender time.
10. The all-consuming nature of caregiving can lead many bereaved parents and caregivers to feel aimless and that they no longer know who they are. It is okay to grieve your former identity, as well as your child. Try to find small ways to explore how you’d like to use your time. Hobbies, socializing and volunteer work are popular options. And remember, you are still your child’s parent, and they are still your child. Your relationship has not ended but has simply taken on a new form.
11. Try to avoid making big decisions or changes for a while. Give yourself time to grieve and for the initial shock to wear off. But if you want to shake things up in little ways, go for it. Whatever helps you cope.
12. Seek support when and where you can find it.
13. This is a new experience, and a painful one. It’s okay to need help as you process your grief, as well as the trauma that can come from your child’s medical journey.
    There are many different types of resources, such as bereavement support groups, group therapy and individual, family and couples counseling – both in person and online. While it may be frustrating, know that finding a fit can take time. Just because one counselor or support group doesn’t feel right, doesn’t mean you won’t find other helpful options. Your child’s social worker, hospice team or medical team may have useful suggestions.

Family is messy. This is unfortunately never truer than before and after a child dies. It’s a myth that traumatic experiences automatically bring everyone together. In fact, conflict is common among couples, co-parents and between immediate and extended family members. This is because no two people cope and grieve in exactly the same way or along the same timeline. And in the lead up to and immediate aftermath of a child’s death, everyone’s emotions are high.

It is common to have differences of opinions over end of life decision and in planning memorials and other ways to commemorate your child. (See the Goals of Care and Planning for Your Child’s Death sections above for more). You may also become frustrated when others do not support you the way you want or grieve in the way you think is appropriate. But that does not mean anyone is doing it wrong. Again, there is no one way to grieve a child.

Later, you may struggle when others expect you to “be over it already” and think you’ve been grieving for too long. You may feel they have forgotten your loss or your child. This can be very hard, as grief can last years and re-emerge on special days and at random times.

Fortunately, the death of a child does not have to drive your family apart. In fact, through open communication and understanding, you can gain depth to your relationships that otherwise may have never developed. This is not to say any of this is easy. It takes hard work and time.

Patience and compassion for the ways everyone in your family grieves is the key, as is trying to support one another in the unique way each person desires. Speaking as openly as possible about feelings and needs will help this process. It may also be helpful to work with a grief, couples or family counselor or other mental health provider. Religious leaders, trusted advisors and other grieving parents can also offer helpful insight. And of course, setting boundaries or distancing yourself from more hurtful or less understanding family and friends is always an option. You can re-engage and seek repair in these relationships at a later time.

It can sometimes be difficult for grieving parents and caregivers to care for and connect with surviving siblings of a deceased child. You may be too overwhelmed by grief and/or the logistics that come with a death to care for another. Or you might feel resentful that one child continues living when the other has died.

Some grieving parents develop new fears and become overprotective of a surviving child. You might worry they will die the same way or be lost in a different manner. This can lead you to be more controlling and restrict their independence to protect them at all costs. Unfortunately, this typically results in tension with the sibling, especially if they are a teenager or young adult. Or you might feel the need to push your child away, causing them additional grief and to feel guilty and/or abandoned.

Fortunately, these feelings usually become weaker or go away with time. While you wait, support siblings the best you can and let them know you love them just like your other child. It can also be helpful to identify other adults to help care for them. Extended family, partners/spouses, and family friends are all great options. Older children may even want to choose someone themselves to lean on for a time.

If these feelings become overwhelming, or last for an extended period, seek professional support. Mental health providers and grief counselors can help you process your feelings and create a plan to continue to care for yourself and others. It can also be a good idea to seek professional help for your surviving child.

After you’ve shared the news of your child’s death with your immediate family, you may be wondering how to tell everyone else. First and foremost, it is up to you if, when and how you share information about the death of your child. You can also decide what information to share depending on who it is. This can be a tricky balance for many bereaved parents. One of the worst questions any grieving parent can hear is, “How many children do you have?”. (And yes, you are absolutely still a parent, even if your child is physically gone.) Know that your answer can change day to day and depending on the situation and your mental state. There is no one-size-fits-all right answer.

That said, many families like to share the news with a wide network of people immediately following their child’s death. It can be helpful to gather a list of who to tell, along with their contact information, in advance. This list could include extended family and friends, your child’s medical team, and your child and their siblings’ schools. You may also want to reach out to your deceased and living children’s friends’ parents so they can break the news themselves. This way your surviving children will not have to and their friends’ parents can tell their children the way they want to.

What you say is completely up to you. You could simply share that your child has died or include information on planned memorial services and ways to honor their life. You may also wish to include what, if anything, you are comfortable with people sharing and ways to help. As to how, you can call close family and friends directly, and/or utilize text, email, social media, and/or personal websites, such as CaringBridge.org. You can also divide your list of people into groups (e.g. school, family, community etc.) and designate a person from each to notify the rest.

Once the news is out you do not have to see or speak to everyone. You can choose who you want to talk to and have others take messages or contact them on your behalf. You can always catch up later when you are ready, and things have settled down. When you do speak with others, it can be helpful to have a short, prepared phrase to use to avoid a long conversation. Be sure to help any remaining children do the same as well.

People’s reactions will vary. Death is an uncomfortable topic, and many do not know what to say or do. Some unexpected people may be incredibly supportive while others will react in disappointing ways. Those uncomfortable with death may try to act like your child hasn’t died or avoid mentioning them in case it reminds or upsets you. (As if it isn’t on your mind already!) Others will think they are being supportive but say insensitive things. Common unhelpful responses include, “I don’t know how you do it”, “At least you have other children“, “You can always have more”, “It was God’s plan”, and “They’re in a better place” These people usually mean well, but hearing these things is still painful.

People may also have opinions about the “appropriate” timeline of grief. They may initially be very supportive, then after some time act as if you should be over it already. Ignore them. There is no time limit or correct way to grieve.

It is normal, and healthy, to feel angry when others are not as sensitive as you feel they could be. Lean on those who are helpful and feel free to distance yourself from those who cause you further pain. Finally, remember, you can share the news and talk to others at your own pace. Should you need to retreat for some time, that is completely fine.

Losing a child is likely the hardest thing you’ve ever experienced. It is normal and appropriate to deeply grieve. However, there are times when professional help is necessary.

Some signs you may benefit from additional mental health support as you are coping with the loss of your child include:

1. Significant changes in mood / behavior
2. Withdrawing / isolating
3. Emotions that interfere with your daily life, work, or relationships
4. Difficulty connecting with others, including your partner, other children or family members, and friends
5. Concern from others
6. Thinking about or engaging in self-harm
7. Thinking about or harming others
8. A desire for additional support

If you are experiencing any of these symptoms, or if distressing emotions go on for weeks or interfere with everyday life, you may want to seek help. Your child’s medical team, your physician, and/or your insurance company can often offer referrals to psychologists, psychiatrists, or other mental health providers. Support groups and religious figures can also provide support.

Finally, remember, you have gone through one of the most difficult things in life. There is absolutely nothing wrong, shameful or bad about needing professional help. And there is no wrong time to reach out. Treat yourself gently, lean on your community and take what support you can.

Below are a few suggested books, website and toolkits to help you as your child nears end of life and after they have died. You can also find more resources to help you cope on the Resources page.

Books

1. On Children and Death: How Children and Their Parents Can and Do Cope With Death by Elisabeth Kubler-Ross
2. The Worst Loss: How Families Heal from the Death of a Child by Barbara D. Rosof
3. A Broken Heart Still Beats: After Your Child Dies by Anne McCracken and Mary Semel
4. Bearing the Unbearable: Love, Loss, and the Heartbreaking Path of Grief by Dr. Joanne Cacciatore
5. Heaven’s Child: A true story of family, friends, and strangers by Caroline Flohr
6. Permission to Mourn, A New Way to Do Grief by Tom Zuba
7. Healing a Parent’s Grieving Heart: 100 Practical Ideas After Your Child Dies by Alan D Wolfelt
8. When a Grandchild Dies: What to Do, What to Say, How to Cope by Nadine Galinsky Feldman

Websites

1. Courageous Parents Network – End of Life and Bereavement
2. Dougy Center
3. Grieve Well
4. Child Bereavement UK
5. Bereaved Parents USA
6. Grieving the Loss of a Child – How to Cope
7. MISS Foundation
8. Children’s Bereavement Center
9. Childhood Cancer and Leukemia Group End of Life and Bereavement Resources Child Bereavement UK

Toolkits

1. NACG Toolkit: Responding to Change & Loss in Support of Children, Teens, & Families
2. CCLG – Facing the Death of Your Child
3. NIH – When A Cure Is No Longer Possible: A Guide for Parents and Caregivers
4. For Caregivers of a Child with Serious Illness – Conversation Starter Guide

Podcasts

1. Connecting Through Grief When a Child Dies