Grief and death generally go hand in hand. Yet grief can also come early, when death has yet to occur. When a debilitating ailment strikes, loved ones may grieve not only after death, but before, while their loved one is still alive.

In fact, for many caregivers, “anticipatory grief” can be more painful than after-death grief. In one study, 40 percent of women who had lost their husbands found the pre-loss period to be the most stressful. This anticipatory grief, which is not experienced by everyone, can involve not only sadness, but conflicting emotions, such as anger or even guilt for grieving while a loved one is both alive and suffering.

In addition, not only caregivers, but patients may suffer from this type of grief. About one fourth of patients grieve, not only because death seems to be approaching, but also because disease has wrought so many changes to their lives. Cancer patients, for example, may be suffering from a loss of competency because they can no longer perform at home or at work due to the trauma that both the disease and its treatments, such as chemotherapy, cause. Their sense of identity as a parent or partner may be shifting due to exhaustion or depression, and they may be grieving for this lost sense of self.

Moreover, for those who feel their deaths are on the horizon, they may feel disconnected from family members who refuse to give up hope. Family members also may feel guilty for feeling grief ahead of time as they may feel this indicates a lack of hope.

For patients, anticipatory grief has been shown to increase distress, pain, and medical complications, while for caregivers, such grief can cause irritability, depression, and anxiety plus repeated loops of thoughts, such as mentally replaying their loved one’s anticipated death and its consequences, both financial and emotional.

So what can you do, if you or someone you love is dealing with anticipatory grief?

1) Acceptance Is Okay
According to the National Cancer Institute, anticipatory grief is more likely to occur among people and their larger community of loved ones who have not yet accepted the fact of an approaching death. Loved ones may feel guilty for feeling such acceptance, but if they realize, accepting the inevitable actually helps their loved one handle it and have a better outcome with less distress, then perhaps those feelings might ease. Therapists who specialize in this field can also be of service, and support groups for both patients and caregivers can be vital.

2) Control What You Can
The end can be a spur to address lingering issues and profess feelings that might sometimes go unexpressed. If there are any conversations that you ache to have with your loved one, have them. Also, if financial issues are worrying you, contact your bank or perhaps an attorney to sign any needed paperwork. In addition, funeral arrangements might be considered. Make a list of your worries or your loved one’s worries and address that list.

3) Enter the Present
If you, your loved one, and your extended social network have accepted that death is nigh, then those last months or days can be spent savoring each other. One woman dying of pancreatic cancer took her last few months to have a series of “parties” with family and friends. Every Tuesday, she welcomed all her friends and family to visit anytime and connect as her life slipped away. For this extrovert, it was not only a warm way to enjoy her last weeks of life, but it also provided precious memories for her five children and extended family. An introvert might be overwhelmed by such an endeavor, but the idea is to find ways to bring joy into your life. So if you love being surrounded by people, invite them over, or if you prefer quiet connection, have a special day in the forest alone or with one precious friend. Remember this time will be fleeting, so try to bring some happiness and connection into it.

Also, keep in mind that people who lack vital connections with others are the most likely to experience severe anticipatory grief, so take some time to reach out and find ways to connect with others while your loved one is still alive. We all need each other, particularly when our worlds are undergoing dramatic shifts. So, consider new ways to make friends. You’ll need them, and one day, they’ll need you too.

Thank you for reading, please share with a friend, and be well! —KK

Please consider making a donation to the Kathi Koll Foundation to help make a difference in struggling family caregivers’ lives. Thank you!

 

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