An excerpt from A Caregiver’s Love Story.

After Bill was given his terminal diagnosis of idiopathic pulmonary fibrosis and the bloody nose scare, I began to worry about the future. It was like “waiting for the other shoe to drop,” wondering when and how his death would happen. I didn’t want him to suffer and wanted him to be comfortable until the end.

My other great worry, and it seems rather selfish, is what would happen to me? How would I get through all of it on my own? I wondered if this was common. I imagined it was but tried to stop myself from agonizing about the future when I was still dealing with the present. I wasn’t very successful at it. I found some interesting facts online about these common feelings for the spouse of someone who has a terminal illness.

I discovered from my research that anticipatory grief, or grief that occurs before death, differs from the grief that happens after a death in that it is seldom discussed with family, friends, or therapists. It seems that it is felt to be socially unacceptable to talk about the grief that occurs in anticipation of an impending death of a loved one. The person could be receiving the support needed to get through this difficult time if they were willing and comfortable discussing their feelings. Anticipatory grief is not reserved just for the survivors. The dying also feel this same strong emotion.

Rather than death alone, this type of grief includes many losses, including the loss of a companion, changing roles in the family, fear of financial changes, and the loss of “what could have been.” The loss of time spent together and the memories and dreams of happier times are all part of anticipatory grief. Grief before death often involves more anger, more loss of emotional control, and atypical grief responses.

This may be related to the difficult place—the “in-between place” people find themselves in when a loved one is dying. A person can feel mixed up inside because they feel they keep failing in the attempt to find the balance between holding on to hope and letting go.

Not everyone experiences anticipatory grief. It’s a very individual emotion and may depend on past experiences with death and grief. In some cases, the person may feel a relief that the loved one has passed away and is no longer suffering. For others, very little grief is experienced while a loved one is dying, and in fact, they find they don’t allow themselves to grieve at all because it might be construed as giving up hope. Individuals can also experience the grief before the loss even more severely than after the death.

Yet, as painful as the grief is, it can serve as an opportunity for personal growth for the dying individual and the family. It can provide an opportunity for finding “closure” with family and friends. Reconciling differences, offering forgiveness, and a chance to say goodbye. This is the time where conversations can be had that allow the surviving family member a chance to say all the things, they might wish they had said after the person dies.

Sometimes, people do not want to visit a dying loved one. They are afraid their grief is so obvious and strong that they don’t want the person to see how they are “suffering” as well. Statements like, “I don’t want to see them while they are ill; I want to remember them the way they were before they got sick.” “I can’t handle seeing them sick and watching them suffer.” Without understanding that the anticipatory grief they are both suffering could be healing if a brief visit would allow both parties to share their feelings.

Seeing a loved one before they die can help the grieving find meaning in their relationship, even if it was not a good one. For those who are dying, anticipatory grief provides an opportunity for personal growth at the end of life, a way to find meaning and closure. For families, it can be a chance to reconcile differences and grant forgiveness. For both, it is a chance to say goodbye.

Though anticipatory grief doesn’t necessarily make the grieving process easier, in some cases, it can make death seem more natural. Seeing a loved one when they are weak, failing, and tired might make it a little bit easier to say, “It’s OK for you to move on to the next place.” Giving permission for a loved one to die is also a way of grieving but understanding that the loss is inevitable. It’s good for families to talk to their dying loved ones as much as possible and inevitably tell them it’s OK to leave. Often the loved one will soon die after permission from the family has been given.

Anticipatory grief for the loved one and everything the loved one added to a person’s life is not a substitute for grief after death. It probably won’t shorten the amount of grief a person suffers either. There is no set time span for grief or how someone grieves. Even if the dying individual has been ill for a long time, it won’t necessarily prepare you for the actual death. Death is a very individual experience for the dying and their loved ones. It doesn’t happen on a schedule, and it doesn’t have to be painful. If the dying person is cared for in a loving and nurturing environment, perhaps with hospice involved to ease the pain, death can be a very quiet and humbling experience.

I experienced many deaths when I was a nurse, from babies, kids, young adults, the elderly, and my own family. It was always heartbreaking, but I found that staying with the dying and the family and supporting them in what little way I could made the experience more bearable. I was not a hospice nurse, but I did not fear death, and I managed caring for the dying without difficulty. That does not make me an expert, and when my loved ones die, I’m not sure how I will act, but I’m hoping my experience can help those who have not experienced death very much, like Bill’s children.

These are feelings that one may experience with anticipatory grief. Remember, you may feel them all, or just a few of them, but what you are feeling is not wrong. It is your heart that is breaking. These emotions can ebb and flow, some days will be very difficult, and others will feel like old times and pass without any sadness.

Nancie Wiseman Attwater is the author of A Caregiver’s Love Story.

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