A shared universe › Blog › Saying goodbye ahead of time · Español
Anticipatory grief is the sorrow that begins before a death, when you know that someone you love is not going to get better. It is normal, it is not giving up, and it sits alongside caring and hope; what seems to help most afterwards is feeling prepared, not having grieved in advance. They are still here, and you are already missing them. You cry about what is going to happen, you imagine life without them, and then you feel bad for having thought it.
The psychiatrist Erich Lindemann, in a 1944 paper on the symptoms of acute grief, was the one who coined the term anticipatory grief to describe that sorrow which arrives ahead of time. Since then there has been much debate about exactly what it is, and current research often speaks of “pre-loss grief”.
It is not only the coming death that is grieved: there are also the losses of every day, the things the person can no longer do, the plans that will not happen.
Feeling that sorrow does not mean treating the person as already gone, or losing hope. The two live side by side: you can care for someone with all your strength and, at the same time, be saying goodbye.
The US National Cancer Institute’s guide to grief points out that it can be felt both by the person who is ill and by their family, and that it is different from the grief that comes after the death.
People often think that someone who has had time to prepare will suffer less afterwards. A review of studies of relatives caring for someone at the end of life, published in 2016, found no support for that idea. On the contrary: very intense sorrow during the caring was linked to harder grief afterwards.
What was linked to grief that was easier to carry was feeling prepared: knowing what to expect, having talked about what mattered, having some practical matters settled. That is why the authors suggest giving more support to carers who are feeling very strong sorrow or who feel unprepared.
Accompanying a long illness wears out body and spirit. Accepting help with shifts, meals or errands is not the same as not being there. Taking turns with other relatives, sleeping when you can and getting outside for a while lets you carry on accompanying them for longer, and more calmly. If you feel you cannot go on, there are ideas in Carer burnout: looking after yourself when you care for a relative.
Wishing it would end, because of their suffering or because of your exhaustion, is very common and does not make you a bad person.
Those thoughts usually come alongside a great deal of love, and they take nothing away from it. If, after the death, guilt or self-reproach for having had them appears, it may help to read Guilt in grief.
If sorrow is keeping you from sleeping or eating for weeks, if you feel there is no way out, or if exhaustion is overwhelming you, talk to your GP, to the team looking after your relative or to a psychologist. You can also ask the team caring for your relative what support there is for the family. In Spain you can talk to a person at the Teléfono de la Esperanza, 717 003 717, at any time. If you are thinking of ending your life, call 024: it is free, confidential and answered 24 hours a day. If there is immediate danger, call 112. In another country, call your local emergency number or a helpline there.
In A shared universe you can light a star “For someone” during this time. Other people will keep it company with you.
You can write in it what you hope for or what weighs on you, and later share how things are going. It shines for seven days, and you can come back and keep it lit for another seven.