The emotional toll of having a loved one, or being the loved one, in hospice care is complicated and far-reaching. The stress, anxiety, and grief can affect everyone in a multitude of ways, and bereavement and grief are large parts of the emotional journey of hospice for families and caregivers.
Grief, however, doesn’t only come after a loved one has passed. Anticipatory grief can develop prior to a person’s passing, and the symptoms can, at times, be more intense than the grief after death It is important to understand the symptoms and stages of anticipatory grief to help caregivers and families remain present while a loved one is in hospice care, and to keep themselves mentally and physically healthy.
Below, we discuss the definition of anticipatory grief, the symptoms and stages that go along with it, and how to process the immense feelings associated with anticipatory grief. We also provide a list of resources that can help you and your loved ones process anticipatory grief.
What is anticipatory grief?
Conventional grief usually occurs after a loved one has passed. It is estimated that 50-85% of people who suffer a loss experience grief in some way. Anticipatory grief, on the other hand, is preparatory and occurs before someone experiences loss. It is defined simply as “any grief occurring prior to a loss, as distinguished from the grief which occurs at or after a loss.” It often occurs in families and caregivers facing the eventual loss of a loved one, and it can also occur in the patient themselves as they confront the inevitability of their own passing.
With anticipatory grief, rather than grieving the loss of a loved one who has yet to pass, people grieve about things they won’t get to do in the future and often focus their grief on lost opportunities. People may mourn not being able to spend holidays with the loved one, missed milestones such as birthdays, graduations, or weddings, or smaller things like sharing a meal or coffee.
People may also feel anticipatory grief if their loved one has been confused or unconscious for a long time – for example, if the patient has dementia or Alzheimer’s. They may feel they’ve lost their loved ones already even if the loved one is still physically present.
It is common for families, caregivers, and hospice patients to experience anticipatory grief for months prior to a patient’s passing. It can begin shortly after a terminal diagnosis is communicated, so understanding the symptoms of anticipatory grief can help you and your loved ones.
What are the symptoms of anticipatory grief?
Just like with conventional grief, no two people’s symptoms of anticipatory grief are exactly the same. It’s important to know the range of symptoms so you can be sure you or your loved one are taking steps to receive help.
The common symptoms of anticipatory grief include:
- Anger and irritability
- Uncontrollable or overwhelming emotions such as anger, sadness, and loneliness
- Mood swings
- Anxiety, fear, or dread
- Denial
- Loss of appetite
- Difficulty concentrating
- Guilt
- Lethargy or lack of motivation
- Sadness
- Numbness or disbelief
The stages of anticipatory grief
The five stages of conventional grief are fairly well known: denial, anger, bargaining, depression, and acceptance. The stages of anticipatory grief, however, are somewhat different. Researchers have identified four different stages of anticipatory grief:
- Acceptance (“Death is inevitable”): The first stage is realizing that your loved one, or you, faces death and that a cure is unavailable. Typically feelings of depression and sadness are predominant in this stage
- Reflection (“Concern for the dying”): This stage involves an extreme concern for the person dying. Family, caregivers, or the patient themself may reflect on prior interactions or moments. This can cause overwhelming feelings of guilt or regret.
- Rehearsal (“Rehearsing their death”): This stage is a necessary piece of the anticipatory grieving process. This stage includes things like communicating with the loved one about their wishes (funeral planning, financial issues, legal issues, etc.) and is also a point where many begin to say their goodbyes.
- Imagining the future (“Life without you/your loved one”): The final stage entails caregivers and patients imagining life without their loved ones or themselves. They may visualize life moments, holidays, or special occasions occurring without them or the loved one.
How can you cope with anticipatory grief?
There are multiple ways that you and your family can process and cope with the many feelings associated with anticipatory grief. No one method is the right or wrong way to deal with grief, but finding what works for the individual is incredibly important.
Some steps you can take include:
- Find someone to talk to about your feelings. Speaking with a close friend or family member, a social worker, religious counselor, or trusted member of the medical team can be helpful. You can also speak with a professional counselor or psychologist.
- Write down your feelings or thoughts. Keeping a journal to work through your feelings can be an incredibly helpful tool to process grief. Try to keep a regular writing schedule for the best results.
- Take care of your body. Maintaining a healthy and balanced diet can go a long way to helping you process grief. The same is true for exercise. Exercise helps to lower our stress and anxiety levels, which can be highly beneficial for improving your mood and processing grief. Also, make sure you’re getting enough rest and drinking plenty of water.
- Try meditation. Meditation can help clear the mind of intrusive or debilitating thoughts so you’re more present. It also improves your mood and can help you sleep better.
- Don’t ignore your emotions. Often, our response to overwhelming feelings is to tamp them down so our friends and family, and especially the patient, don’t see us suffer. However, that is not a healthy way to process emotions and can lead to increased mood swings, more intense, negative feelings, and maladaptive coping techniques. It is best to let yourself feel your emotions fully so you can learn to regulate your motions and your grief more easily.
- Educate yourself. Sometimes, it’s the not knowing that hits us the hardest, and it can be helpful to educate yourself on your loved one’s illness. Speak with the medical team about what symptoms to expect, side effects of medications, and more, so you’re more prepared for the unexpected and your reactions are more regulated in the moment.
It is also important to note that many people find that experiencing anticipatory grief and processing through it has helped them better handle the grief that comes once their loved one passes. The better you can prepare yourself, the healthier you may be able to grieve when the inevitable happens.
Resources to help with grief
If you feel you need some help in processing anticipatory or conventional grief, do not hesitate to reach out to someone. Waiting too long to get help can cause difficulties or raise the risk of a mental health emergency. You can get help at any stage of your grieving process, so never feel that it is too late.
Also, many people don’t realize that hospice support includes grief and bereavement care for surviving loved ones. At Heart to Heart Hospice, we understand the difficulty associated with losing someone you love, and we want to ensure that loved ones are left with positive memories and peace of mind. Leading up to the patient’s passing and up to 13 months after, hospice can offer assistance with grief care. The goal is to help family and friends manage their grief, get practical support, and provide referrals if extra resources are needed.
Here are some other resources for crisis support for anticipatory and conventional grief:
National Alliance on Mental Illness
IMAlive, National Hopeline Network – IMAlive is a live, online network that uses instant messaging to respond to people in crisis and in intense emotional pain. Call 800-784-2433 (SUICIDE) or chat online to get help.
Substance Abuse and Mental Health Services Administration’s National Helpline
This is a free, confidential treatment referral and information service (in English and Spanish) for individuals and families facing mental and/or substance use disorders, available 24/7. Call 1-800-662-HELP (4357).
Suicide Hotline in Spanish: Ayuda En Español
The National Suicide Prevention Lifeline provides free and confidential emotional support to people in suicidal crisis or emotional distress 24/7. Call 800-273- TALK (8255), Press 2.
Suicide.org – Suicide Hotlines by State – Suicide.org is a nonprofit organization that aims to prevent suicides, support suicide survivors, and educate the public about suicide. At this site, find suicide awareness and support at suicide hotlines listed by state.
The Trevor Project – National 24-hour, toll-free confidential suicide hotline provides crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer, and questioning (LGBTQ) young people. If you are thinking of suicide and in need of immediate support, call 866-488-7386, text START to 678-678, or chat online.
The Veterans Crisis Line – The Veteran’s Crisis Line is a free, confidential resource available to any veteran. If you are a veteran in crisis or concerned about one, there are caring, qualified Veterans Affairs responders standing by to help 24/7. Call 800-273-8255 (press 1), text 838255, or chat online.
