Grieving Before a Loss: Anticipatory Grief

Many people are surprised to learn that we can feel symptoms of grief before our loved one dies. We have a name for it: anticipatory grief.

Anticipatory grief can be felt as soon as someone learns of a life-threatening diagnosis. Although it is like grief that is felt after someone dies, it has some unique characteristics that often take people by surprise.

Anticipatory grief doesn’t just affect one person

Anticipatory grief can be experienced by both the person who is facing the end of their life and their loved ones, making it uniquely challenging. Grief Counselors find that families will often react to the same loss in different ways, making it hard to understand one another during this time. They also report that people will not want to burden each other when they are grieving, causing potential breakdown in communication and relations with one another.

In hospice, counselors encourage families to utilize their team, which includes social workers, chaplains, and other therapies, who can provide a lot of assistance to families in facilitating conversation with one another and also supporting each of the family members individually in determining the type of support they need during this time.

It’s complicated

Grief that is experienced in the anticipation of the end of someone’s life causes many mixed emotions. Patrice Martin, Director of Grief and Integrative Therapies, shares, “I’ve heard people describe their experience at the end of life as the ‘in-between place’, Martin explains, “where someone experiences both thoughts of holding onto hope and letting go.” Given the conflicting nature of these thoughts, the person can often feel confused and overwhelmed by changing emotions.

Counselors discuss the importance of self-care during anticipatory grief, which can cause emotional, mental, and physical exhaustion. In managing the ups and downs of illness, counselors encourage families to find ways to tend to their basic needs to help sustain them during this uncertain time. Martin states that, at the end of life, families often need to be preparing for both the short-term and long-term scenarios at supportive time and advises that they fully utilize the supports of the hospice team, who are skilled in helping to determine the goals of care, to assist them in identifying what matters to them most.

Denial is part of the process

Whenever someone is faced with bad news, it is natural for them not to believe it, or to question the reality of what they are being told. Martin explains that denial has a purpose in the grief process. “Denial can act as a buffer against intense emotions, allow us to keep positive, maintain our daily tasks, and feel a sense of normalcy during this time.” Thus, if someone appears to be in denial, that is not necessarily a concern. The concern, Martin says, is when someone appears to be “stuck” in denial. “Sometimes, by not accepting the reality of the situation, we may lose track of the big picture and not realize the futility or even harm of continuing the same treatments or activities”. In fact, Martin says, it’s quite common for a griever, after the death of their loved one, to look back and have regrets about decisions they made. She often hears clients in grief counseling express regret for losing patience with their loved one because they weren’t eating enough, understanding their limits, or moving fast enough. This is inevitable, says Martin, as it’s very difficult to fully accept the reality of their loved one’s limitations at the time it is happening. “We remind our grievers to remember what they understood at the time when they made those decisions, and to give themselves grace”.

This is where Martin says using the support of a hospice team can be very helpful to both the person and their family, as they assist both in understanding their illness and prognosis, as well as what to expect as the person’s condition declines. The hospice team also provides each family with a booklet that outlines common changes that occur when someone is reaching the end of their life. Martin encourages families to share with their hospice team any questions that they have or to ask what they can expect as the illness progresses.

It’s grieving more than just the loss of life

Although anticipatory grief includes all the emotions that relate to the fact that someone’s life is coming to an end, it also includes emotions relating to the losses that the person and their family have already experienced. Having a life-limiting illness can include many losses, including a person’s independence, mental and/or physical abilities, sense of control, plans for the future, sense of security, and sense of identity. A caregiver, whose loved one experiences these changes, can also feel as though they are losing their person before they are gone. Some families must face a physical separation due to the loved one’s need to reside in a different home or in a skilled nursing care facility. And some families face a psychological separation from their loved one due to cognitive decline or increased fatigue.

Anticipatory grief can also increase as the illness progresses. One grief client described her experience. “It was more of an unraveling as the weight of it got heavier with each relapse, with each hospital admission, each ER visit.”

Counselors advise that families acknowledge the losses they are experiencing and find ways to express how they are feeling about these losses. Families can talk with the hospice social worker, chaplain, or a grief counselor, and can also attend a caregiver support group to meet with others who understand. The Grief Support Program hosts a virtual caregiver support group for anyone who is caring for someone with an advanced illness. This reduces the isolation that can be felt both by caregiving and with grief.

Yes, anger happens too

Feeling angry about the situation can be quite common for both the person facing their illness and their loved ones. Again, Martin shares that anger has its purpose in the grief process. “Anger has a bad reputation, but it can actually help us to recognize what is important to us, protect things that we value, or help defend ourselves or our loved ones from a threat.” Since someone’s life is in danger, it only makes sense that they may react with anger. What’s important is that the person experiencing these reactions finds healthy ways to express their anger. Oftentimes, grievers are able to do this when they find people who understand and validate their feelings of anger. Again, this is where the hospice team can be helpful, as they encourage families to share any concerns they have about their loved ones’ well-being, or any worries they may have for the future. Counseling and support groups can also provide someone with the opportunity to share their frustrations without feeling judged.

Grief can be isolating

After a life-threatening diagnosis is given, we are forced to deal with a new reality, while the rest of the world seems to keep moving along. It’s not uncommon for someone to retreat from others as they process what is happening. And it can be hard to find others that understand what you are experiencing or know how to support you. Counselors encourage grievers to stay connected to their support system while also finding others who understand. Hospice and palliative programs are designed to provide support that is useful and understanding. At Lightways Hospice and Serious Illness Care, we believe that no one should have to face a life-threatening illness alone.