When a loved one becomes terminally ill, it’s normal for family and friends to begin experiencing anticipatory grief. Facing death is not easy, especially when it’s a loved one’s death. At the same time, they will require care and comfort. Terminal illnesses come with massive physical and emotional demands.
We created this guide to make coping with the dying process more manageable. It covers the realities of impending death and how to cope with anticipatory grief. The guide will also give you tips on how to help the people affected by the person’s death and provide advice on practical matters like an end-of-life plan and funeral arrangements.
Facing Terminal Illness
Time seems to freeze when you first hear that someone you love has a life-limiting illness. You could then experience a wide array of emotions. Every person deals with it in their own way and in their own time. Some slip into denial and refuse to acknowledge reality, and others express anger. Some people even feel calm until the final days approach.
Some want to spend time with their loved one, assure them that their life mattered, and resolve issues they may have had. Others feel uncomfortable spending time with someone they’ll have to say goodbye to soon, and instead, they turn to other family members to help.
Most people are not 100% sure of what to expect and what to do. This guide is an excellent starting point if you have a terminally ill loved one. But first, let’s define anticipatory grief.
What is Anticipatory Grief?
Instead of experiencing the grieving process after a loved one’s death, anticipatory grief happens during the last days of the person’s life before death. It can be felt by the person’s family and friends and also by the dying person.
This type of grief gives loved ones a chance to spend time together and say goodbye, unlike the type of grief that happens when somebody dies suddenly. Still, anticipatory grief does not replace or shorten the grieving period, and it doesn’t stop grieving from occurring after the person dies.
Does Everyone Feel Anticipatory Grief?
Although anticipatory grief is common, not everyone feels it. Sometimes people use words like “fight” and “battle” concerning terminal illness, suggesting that they can overcome it. When this happens, it makes it difficult for the dying person and their loved ones to grieve as the person nears death.
Some people feel guilty about grieving for a loved one while they’re still alive and feel like they’re giving up on them. It’s important to know that anticipatory grief is normal and healthy. It could give you a chance to resolve issues and spend time with your loved one in their final days and find the closure you may not have been able to otherwise.
It is also possible to feel like you’re somewhere between accepting the person dying and holding on to hope that they won’t die. This often happens when the dying loved one goes through physical changes as the illness progresses, making it more “real” but still having some good days where they seem more like themselves. This can be confusing for anyone.
The truth is that fluctuating between feelings also is a normal part of the anticipatory grief process. You don’t have to choose how to feel. Everyone deals with death in their own way and on their own time.
Dealing With Anticipatory Grief
Everyone deals with anticipatory grief differently. Even family members and close friends will experience entirely different emotions. There is no right or wrong way to deal with the anticipatory grief of a terminally ill loved one. Understanding anticipatory grief in other people begins with understanding the concept of death and how different age groups view it.
The Concept of Death for Different Family Members
People are influenced by past experiences of death, religious beliefs, community practices, emotional development, and outside influences like movies and TV. Even people who have never experienced death will have their own idea of death. It also depends on different age groups. Let’s explore this.
Babies
Of course, death has no concept for a baby. However, babies react to separation from their parents, so the death of a parent will affect the baby. Furthermore, a terminally ill baby will need physical and emotional care by health professionals, just like any other age group.
Toddlers and Pre-Schoolers
Although death has very little meaning for toddlers, they will pick up the anxiety from the people around them. When toddlers’ loved ones are sad, they sense the emotions and become afraid or upset even if they don’t understand the difference between life and death.
Children who are about to begin school can understand that death is something that adults fear. However, this age group may view death as temporary as it is in cartoons. They won’t know that it is permanent. It’s important to explain that death is not temporary and is natural.
If the child asks questions about how and why death occurs, answer them as simply as possible while providing reassurance and comfort.
Pre-Teens
Pre-teens have a more realistic understanding of death and may even have experienced the sadness and grief that comes with the death of a family member or a pet. They understand that death is permanent and inevitable. At this age, the child may have questions about the physical process of death and the afterlife.
They may also fear death because they don’t know what happens after a person dies. It’s important to have frank but sensitive conversations with pre-teens about your family’s religious or cultural beliefs around death and what happens after a person dies.
Teenagers
Like pre-teens, teenagers should understand that death is permanent and inevitable and may also have had experience with death. Teenage years are spent actively establishing independence, identity, and relationships with friends and peer groups. During this time, many teens experience a feeling of immortality.
This feeling is challenged when they are confronted by death through the death of a family member or friend. It could make it particularly difficult for some teenagers to deal with death. Facing death could prompt a teenager to slip into denial and even become defiant.
It’s important to listen, communicate, and do your best to understand how the teenager is experiencing a dying loved one.
Adults
Adults understand death and will likely have experienced it. While some adults find comfort in support from friends and family, others tend to isolate and deal with their grief more personally. The grieving process can take many forms for every age group, especially for adults.
Ultimately, the goal is to accept death as the final stage of life. How this is achieved varies between people, families, and different cultural groups.
One thing every age group has in common is the need for support. But just like the grieving process takes many forms, people need different types of support. It all starts with communication.
Talking to a Family Member or Friend About an Approaching Death
Talking about a person dying is not easy, even with family and friends. Understanding how someone is feeling helps with knowing what to say to them when they are dealing with anticipatory grief. People have various emotional responses, for example:
Extreme Sadness
Hearing that a loved one is dying is one of the most distressing things anyone can experience. Extreme sadness is an entirely natural way to respond to this. If you feel you need to talk to someone who is extremely sad, offer to listen, ask them if there is anything they need, and reassure them you are there to give support in any way you can.
Action
Another typical emotional response is to go into action. The person may start making practical arrangements, like end-of-life care, professional emotional support for family and friends, and even religious services and funeral home arrangements.
This person could be suppressing negative emotions by taking action. It’s best to allow them to go through the motions but also offer reassurance that you are there if they want to talk about what is happening on an emotional level.
Denial
Some people find it difficult to accept that someone they love is dying. They may believe that it’s not the end and that they can still help the person fight the illness.
During this emotional response, the person may research all the cancer information they can and try to find new advances in research and potential cures.
The best way to talk to someone who can’t accept that your loved one is dying is to gently state the facts and suggest they speak to a medical professional to understand the seriousness of the illness.
Anger
Anger is often a by-product of fear. When a person knows that someone is dying, they are confronted by their own fears of mortality. This emotional response is self-evident and could involve a raised voice, words of resentment, or even aggression.
The best way to talk to an angry person is to reassure them that it’s okay to feel angry and that you are there for them when they want to talk.
Guilt
Death is inevitable and the ultimate form of losing control. It can make family and friends feel guilty about a loved one approaching death. The person struggling with guilt could begin to go over “what ifs” and “could haves.”
They may think that they could have reduced the cancer risk if only they started eating healthier, or they could have noticed physical changes in the loved one and taken them to a doctor for an earlier diagnosis.
When somebody feels guilty, it’s best to offer support and facts about the illness and reassure them that it’s not their fault.
How to Talk to a Dying Person
It can be challenging to know how to comfort a loved one who is dying. It’s normal to feel awkward and unsure how to communicate or worry about saying the wrong thing.
The person may be in emotional and physical pain, and you’d love to make a real difference, but you’re unsure how. Everyone is different, and there is no guaranteed method to support somebody nearing their death, but here are some tips that may help:
Don’t Be Afraid to Start the Conversation
Check-in and ask how they’re doing. Then ask follow-up questions to show you’re paying attention. Reassure your dying loved one that you are there for them if they feel lonely or scared.
Ask if there is anything, in particular, they would like to talk about and how you can help. You could also ask if there is anything they’d like you to know from you.
Follow Their Lead
The dying process is different for everyone. Some people will be blunt about death, while others will avoid mentioning it. Go with whatever they want to talk about.
Sometimes someone who is dying will begin to hint that they want to talk about death by mentioning their emotional state or physical symptoms, or they could say something about not being around soon.
It’s essential to listen carefully to these cues and to ask compassionate questions that allow them to clarify how they are feeling. It would help if you made them feel comfortable about talking about death.
Focus on Their Needs
When spending time with a family member or friend who is dying, it should be focused on them. Try to comfort them as well as you can by asking what they need. It could be as simple as having a conversation about the weather or reminiscing about happy times.
Your loved one could need help with practical things like shopping or a lift to the doctor, or they may need a hug. The important thing is to make them feel supported and loved during the end-of-life process.
Tell Them you Love and Appreciate Them
Now is the time to tell your loved one how much you love them. Say it openly and as often as you feel it. It would be best if you also said thank you for being in your life and told them what they mean to you. Knowing that they were loved and made a difference in the world makes it easier to die with grace.
Speak Honestly but With Compassion
It’s okay to express yourself honestly when talking to a dying loved one. Be authentic and express your emotions, even if it means crying. However, bear in mind that this time is not about you.
Don’t burden the dying person with worries about what will happen when they’re gone. Be respectful of the end-of-life experience they are going through.
Talk About Happy Memories
Part of the end-of-life journey is to look back on experiences. Ask questions about their memories and life lessons. Ask them to tell you how they want to be remembered and reassure them that they will always be part of your happy memories.
Don’t Avoid Talking About Death
There is a misconception that talking about death with a person who has a terminal illness will only upset them. Although it may feel uncomfortable, talking about death will be a relief for many. It creates a safe space for the dying person to express their fears and emotions.
When a person nearing the end feels heard and loved, it helps reduce the stress associated with the dying process.
Don’t Avoid Saying Goodbye
It’s impossible to know precisely when a person with a terminal illness will die. Every goodbye could be the last, so don’t hold off on saying it in a meaningful way.
It doesn’t have to be overly sentimental, but making an effort to have meaningful conversations will give you and your loved one comfort. When you say goodbye after a visit, remind your loved one how much they mean to you.
Don’t Stop Talking, Even at the Very End
If your dying loved one is nearing the end, you can provide comfort with words and physical touch. A gentle touch can also be a form of communication. Even if they are unresponsive, hold their hand or gently place your hand on them and continue talking. Reassure them that you are there and that you care about them. Your presence and words will be felt and provide comfort.
The Practical Side of Dealing With a Dying Loved One
When dealing with death, it’s not easy to think about practical matters. The sections below are not listed in any particular order but are all critical during the end-of-life process.
Advance Care Directives
An advance care directive ensures that a dying person’s end-of-life concerns and health care wishes are known and respected. The two most common and important advance directives are a living will and a health care power of attorney or proxy.
The will guides health care providers should the person become mentally or physically unable to make decisions.
The health care power of attorney is a form that designates a person who can act on the terminally ill person’s behalf should it become necessary.
Talk to a lawyer qualified in elder law or a local hospital or hospital to prepare advance care directives. Because state laws vary, it’s essential to ensure that advance directives comply with regulations.
It’s important to note that a dying person’s feelings may change about these directives, depending on the circumstances during the end-of-life process. Everyone is entitled to change their mind, and spoken wishes should always override written ones.
Discuss this with a doctor and communicate wishes with everyone involved. It’s also crucial for you or your loved one to take the following steps:
- Talk to family members about the dying person’s wishes for end-of-life medical care. Try to approach the topic with compassion and sensitivity.
- Talk to medical staff and doctors to make sure that they understand the dying person’s wishes and that they can follow the wishes.
- Repeat these discussions periodically with family members and medical staff. It’s essential to make sure that everyone understands and respects your loved one’s wishes.
- Ask medical staff to place a copy of the directives in the person’s medical records.
- Make copies of the directives and give anyone named as a proxy one. Also, provide copies to a family member and a lawyer and keep additional copies in a safe space everyone involved can access.
- If circumstances change, make the required amendments to the advance care directives and repeat the process.
Do-Not-Resuscitate Orders (DNR)
A do-not-resuscitate order (DNR) tells health professionals not to try CPR or defibrillation if the person’s heart stops beating. The document is only written if these measures are unlikely to prolong meaningful life for the dying person or revive them. Generally, CPR is not likely to resuscitate a person in the final stage of a terminal illness.
Here are some tips about using DNR documents:
- Discuss the need for a DNR with your loved one and their doctors.
- Understand that health professionals will still provide medical care. Even with a DNR, the patient will still receive treatment until their heart stops or death occurs.
- Know why it’s essential to put a DNR in writing. If there is no DNR, healthcare and emergency personnel must perform CPR even if the person asked family members to inform doctors that they don’t wish to be resuscitated.
- Only the original DNR is valid, so make sure it’s handy. It’s wise to keep several original documents in strategic places like the home or wherever they are cared for. Hospitals and nursing homes will be happy to keep it on file and note it on the patient’s chart.
Hospice and End of Life Care
Hospice care can occur at home, in nursing homes, assisted living centers, or at hospice residence centers. This care is focused on the quality end-of-life care for people with terminal illnesses. It involves physical, emotional, and spiritual care.
When there is no cure for the illness, hospice care offers a high level of support as well as symptomatic treatment and pain control options.
A hospice team will work with the patient to develop a care plan. Family and close friends will be involved and may help with some tasks like bathing, feeding, and offering emotional comfort to the dying person.
There are many types of hospice programs, but all focus on offering a dignified end-of-life process. Hospice programs generally share these characteristics:
A range of services. Hospice staff can provide nursing care, give emotional support, and administer pain relief medication. Some programs offer emotional support to caregivers as well, many providing grief counseling for a year after the death.
Trained teams. Hospice staff and volunteers cover multiple disciplines, including doctors, aides, nurses, counselors, social workers, and people who offer spiritual care.
Accreditation. Hospices must be licensed, certified, and accredited in most states. Ones that provide services covered by Medicaid or Medicare must be certified.
Insurance coverage. Medicare covers hospice services in most states if the dying person has a prognosis of six months or less to live. Many private health maintenance organizations and healthcare insurers also offer coverage.
Additional Advice on Hospice Care
- Investigate hospice programs well in advance. Some will have waiting lists for facilities.
- Carefully consider what you and other family members will need to do to work with the program in providing care for your loved one.
- Ensure that your philosophy of care aligns with what the program offers regarding resuscitation, antibiotics, hydration, etc.
- Ensure that the support programs for caregivers are adequate for your needs.
- Take care to ensure that the required inpatient services are available.
If your loved one requires a service not covered by insurance, it’s worth talking to the hospice program about a sliding-scale payment plan.
Other Practical Decisions to Make
It’s impossible to predict what will happen in an emergency medical situation, but it’s worth discussing life support options with your dying loved one and the family; for example:
Intravenous hydration. If your loved one can’t swallow, a tube can be inserted into a vein supplying a solution of water, minerals, and sugar.
Tube feeding. People who can’t swallow will also require artificial nutrition. Fluids and nutrients can be supplied through a tube that is inserted into the stomach through the nose.
Mechanical ventilation. A ventilator is a machine that forces air into the lungs of people who can’t breathe without intervention.
Hemodialysis. This is for people whose kidneys are not functioning correctly. It circulates blood through the machine to clean waste from the bloodstream and maintain a balance of essential minerals and fluids.
Conclusion: Planning and Support are Essential
No matter how you feel or behave, life will go on after the diagnosis is made, and both you and your loved one have to find ways to cope with the fact that they are dying.
Some of the support required will entail emotional help from a support structure or professional help from a licensed therapist.
On the practical side of things, the end-of-life plan will include funeral home arrangements and taking care of legal and financial matters before the death occurs.